Panorama. Monday 8.30 BBC

[Trilobyte]

Dear Brunhile and Daughter and Germain and Brucie and CraigC, to name just a few of the people who watched and commented on the programme.

I empathise with some of your posts today, and I was as disturbed as many by the Panorama Programme last night. As I have already said, I have many questions to ask about it. Many of which I have posted earlier today, and Nigel responded to some of my concerns.

But I have only just read Brunhilde's post and link, and I now have even more questions to ask.

As we all know, and that is why we are all here, seeking assistance (though, Goodness Knows Why We should all have to go to such lengths is beyond me) to question the care being handed down to our loved ones, is difficult, time-consuming and exhausting, so I fear I may have to leave this one to someone like Sue38 to whom we already have replied on some other matter, so hopefully she will read this some time and give us a response.

I feel desperately saddened that such an important issue may just have been trivialised by Panorama, by not including important and relevant facts. Anyone who has ever thought about the content of any television programme may perhaps by now have worked out, that it is not what is INCLUDED in the programme, but THAT WHICH IS NOT INCLUDED IN THE PROGRAMME that may hold the clue to our understanding of the motives behind the programme.

I would love now to know which Company made that programme so that I can ask direct questions, which the BBC Panorama lot may not be able to answer. OVER TO YOU, SUE38. You may know how to do that, I would not.

Deeply Saddened Katie, because I don't know where I should place my trust any more!

Dear Katie
My heart and soul goes out to you and all others moved by this.
I am suffering deep from seeing my Father on TV when he is dead.
I want his soul and spirit to rest in peace.
It is painful to all who value their loved ones.
I have participated a little today, but am weak from sadness. It does not go way easily. Those that really understand and and care know.
Nigel

 

[jenniferpa]

Can I just interject here. I don't think you can extrapolate from one case to the next, because we are all dealing with different NHS PCTs and while they're all cash-strapped, some are going to be more receptive than others to any arguments that are put forward. So while it's very worthwhile hearing how other families coped with a given situation, we have to remember that their techniques may not work for us. Also, and this is important, not everyone is going to feel comfortable sharing every aspect of their fight on what is a public forum.

 

[117katie]

Dear Jennifer

I am not for one moment questioning that Cheryl and Nigel AND MOST IMPORTANTLY ERIC went through all the horrific routes we are all going through.

I did not expect that Nigel would be here today reading and replying to posts, so soon after Eric's death. And of course I have huge sympathies with all family members involved, and like you, I have no idea how many family members are there supporting each other.

But, I am questioning the whole ethos / basis of this programme transmitted last night on BBC Panorama in the UK.

FOR THE SIMPLE REASON: that unless we as viewers question it, like we are all being encouraged to question the prescribing of anti-psychotic drugs to our loved ones, and the care being meted out to our loved ones, then I have no choice but to reserve the right to comment and to ask questions and to ask for replies to those questions. In detail.

Sorry, but as I have said before, I cannot stand by and watch anyone "sit back and accept that which just happens to come their way" without QUESTIONING ON THEIR BEHALF.

Katie

 

[EmJ]

Everyone is different and has different experiences therefore each perception of the programme will differ. For me, I felt the point of the programme was to highlight the difficulties that many people face in the current system.

The key point which everyone should agree on is that education on dementia and training is essential.

Everyone has different experiences and when visiting the forum I am pleased when I read positive cases of appropriate care.

Sadly the reality in some cases is that rather than spend money on training and a person-centred approach sedatives are prescribed as a substitute for the care. We need to be aware of this so that more safeguards are put in place to stop this happening.

EmJ

 

[chip]

I watched the program as well with interest. As my husband was put on quetiapine as well but with his first tablet it knocked him silly and i had to moniter him (BP etc) and report back to the day hospital.I got told to carry on giving him it but i didn't and they thought he was getting it. He was better of it than on it. When he went into hospital they started it again. I told them i did not want him on it, but got told the doctor says he has to get it. He has deteriorated rapidly and i just got told its his condition. I have medication experience and i was aware of the side affects,he had other conditions that it could have interfered with but i wasn't listened to.I also don't no why i got the POA as the NHS do not pay any attention to it. Things have to change.Perhaps another program should be on Social Services!!!!

 

[Brunhilde]

Sorry For Upsetting You All

I realise I have upset a few of you, purely and simply by criticising and supplying facts which should SURELY be considered by caring people, when being bombarded by a television programme which had so many flaws in it.

iF THOSE FLAWS ARE NOT VISIBLE TO ANYONE OTHER THAN ME, THEN SO BE IT. I AM GONE.

I'm sorry, but it is not a matter of sensitivities, or of sensibilities, or even anything to do with our own PERCEPTIONS of the world we live in. Fact is fact, and if one Panorama website contradicts another Panorama website in the FACTUAL department, and above all when A TRANSMITTED programme contradicts that which came before it in the FACTUAL department, then no amount of sensibility can wash that away

....

.....

well, basically, sorry folks, it was not my intention to upset, so I shall depart.

EYES OPEN. MIND SET OPEN. NOT CLOSED AND CLOSETED.

BH
Not to return.

 

[sue38]

Epa

So far I have not commented on this thread as I have not seen the Panorama programme yet (I have recorded it) and will watch it when I have the chance to do so.

All I can say at this point is that in my experience an EPA deals only with financial affairs and an attorney under an EPA has no legal standing when it comes to making personal welfare decisions, whether that means hospitalisation, placing someone in a care home or the administration of drugs.

An EPA may show that the donor had some level of trust in his/her attorney(s) and may be taken in to account in an informal way on personal welfare matters, but may, legally, be totally ignored.

 

[cynron]

Chip.

Your experience regards quetiapine was more or less the same as i had with the doctors who prescribed it for my husband, although he had other health issues which were regarded as not being suitable for this drug , they still gave it to him.

Cynthia

PS and to Brunhilde i say farewell,shame you did not stay long enough to get to know a great bunch of people

 

[germain]

Don't go Brunhilde

Hello all,

All of us have different experiences with our loved ones and that doesn't mean our approaches are any less valid than anyone elses just because there are times when we don't all agree or times when we closely question. This, in my opinion, is just our way of fighting for our own and gathering in any facts, however unconnected etc which will help us get the best care we can.

I think most of us agree to some extent that the film was a particularly poor piece of TV journalism BUT it raised very very important issues and that Nigel and Cheryl were very very brave to allow it to be made.

I'm trying hard not to lose the big picture by getting bogged down in the details at the moment.

Nigel will have/have had a funeral to plan and it would be nice to think he would remain a member and in the fullness of time be able to discuss more details (legal process permitting)

But please Brunhilde - don't leave - we all need each other here because the one big thing we have in common is that we all care - and if any one of us can get help or learn anything, however small, from poor Eric's situation , that will help our own in the future, then his very sad death will not have been totally in vain. And apologies Nigel and Cheryl - because these comments are no consolation to you in your loss.

Regards
Germain

 

[117katie]

Germain And Sue38 And Anyone Else Who Reads This

I have to say that I am still disturbed by the programme - and it is my problem, I guess, that I am still disturbed by it.

I will deal with it privately, and if I come to a "final thought" then I will let you know, promise!

Re. EPA and Sue38's reply: that was always my understanding of the EPA, namely that it legally appointed A PERSON to be charged with handling those day-to-day financial affairs that we all have to handle, somehow or other. But when I first came across the need to be involved about decisions regarding the when/where/how it should be financed/care home placement for my 83-year old Aunt, I was asked whether there was an EPA in place - yes, before the MCA came into full force on 1.10.07.

I asked what difference that EPA would make - without answering the question posed to me. I was told then that if there was an EPA in place, then that appointed Attorney would be required to APPROVE (can't remember precise wording used now) that placement, because HE/SHE would be required to fill in all the assessment forms, and subsequently to pay all the required bills, and to have the FINAL DECISION about the placement into a Care Home and the FINAL DECISION about the affordability of that Care Home.

Likewise, whenever I asked questions about the CARE and the MEDICATIONS being prescribed and ADMINISTERED to my 83-year old, I was always asked whether I was "her appointed Attorney". Again, I always asked what difference that would make, and I was repeatedly told that if there was an Attorney, then they - the medics - would only talk to an attorney appointed via an EPA.

EVEN THOUGH I MYSELF ALWAYS UNDERSTOOD - OR RATHER -BELIEVED THAT AN EPA ONLY COVERED FINANCES.

That is why the post I read about the Panorama programme that led me to discover that the family in question already had an EPA in place disturbed me so much. If the medical profession can require an EPA to be in place before talking to the only relatives anyone has left on this earth - and in this case a SON and DAUGHTER, but in my case purely NIECES and NEPHEW - then that is another point the programme missed.

And it still does disturb me that the programme never bothered to explain the pre-existing history of the family involved. Namely, that if I believe the previous BBC panorama website - where the daughter was described as refusing to move her father from hospital BECAUSE she was fighting for NHS fully funded care. AND I APPROVE THAT FIGHT. IT IS SO ESSENTIAL to fight that fight.

Which does not mean that I don't sympathise with the son and daughter, I do. But millions of people will have been misled by that programme.

Katie

 

[Skye]

But millions of people will have been misled by that programme.

Katie, I have to agree with you on that. I think there was a hidden agenda, which perhaps Panorama didn't understand. I think there were two battles here, both valid, but only one revealed.

I feel uneasy that people have been left frightened of medication which, in the right circumstances, can be beneficial.

However, as understand it, the matter is sub judice, and all we can do is reassure -- and fight for our loved ones.

Love,

 

[117katie]

Thanks, Hazel, for that.

I was beginning to think I was the only one who has huge problems with the programme. The research Ballard had done into the dangers of over-prescribing of anti-psychotics was somehow lost in the total concentration on one experience, but on one experience which had "a hidden agenda" perhaps.

When I watched the programme, I was "eyes wide open" and thinking, good at last someone has brought an important issue to the foreground. And somehow, that very important issue was lost, amidst a mass of "SPY CAMERA" footage - which was not at all required to make the point - so why on earth could not a BBC production team and camera crew have shot those same shots - and made the same point. Those shoots could have taken up one-tenth of the programme. Then then there would have been more of the 26-minute programme duration left to show more of Ballard's research. Which after all was heralded as the main focus of the programme.

Does anybody know whether the Alz Soc is looking into this abuse of the issue? Someone should make enquiries. On behalf of everyone who perhaps came innocently by the programme and then looked to Alz Soc home page and found it all somehow ENDORSED.

Thank you so much, Hazel, I shall hopefully sleep better tonight as a result of your response. I must say last night was a "disturbed night of sleep" because I was so annoyed that so many people had been led along a path that I did not feel was justified by the storyline. And I was thinking there must be something sadly wrong with my view of television and reporting and decent honest journalism.

Thanks Hazel

Katie

 

[EmJ]

Hi Katie,

Was reading through your comments on the programme. I recently watched a Panorama programme on the use of ritalin for children with ADD and ADHD. Whilst focusing on the drug ritalin it was similar in style.

It was looking at whether the drug ritalin really made a difference to children in the long run. It then had case studies of children who had very bad experiences of being on the drugs yet the medical professionals continued to distribute the medication to them, one child even being put on strong anti-psychotics.

It then spoke to a researcher in America who had carried out a study and found that really in the long term the drugs did not benefit the children. He explained that rather than put the children on ritalin he ran summmer camps for children and classes for parents on behavioural aspects.

The case studies in the UK then showed how one of the children taken off the drugs had benefited more from counselling and had gone back to school and was managing better without them.

In my opinion the programme on the anti-pyschotics was somewhat similar. Case studies and then a researcher who found the drugs not necessarily to benefit all.

I think what both programmes attempted to do was question the medical profession over their choices with regards to prescribing particular medications and whether alternative paths could have been followed. Ultimately to evoke some reaction.

I do realise that for those with children on ritalin or who had relatives on anti-psychotics it would have caused them concern. I think what may have helped people more is if there had been some sort of debate following the programme to allow the issues raised to be discussed in more detail.

I want dementia issues to be highlighted but sometimes sensational headlines do get in the way. Prime example was with regards to the story of Malcolm and Barbara where instead of focusing on dementia the debate became about whether or not someone filmed Malcolm's last moments or not.

I still feel that there are many families who are let down by the current system and a lot of it is to do with lack of training and education on dementia. It is important that these issues continue to highlighted.

EmJ

 

[Margarita]

http://www.alzheimers.org.uk/site/scripts/news_article.php?newsID=228

The charity has called for an end to the widespread drug abuse of people with dementia following a BBC Panorama investigation. The first All Party Parliamentary Group for Dementia has announced an inquiry into the overuse of anti-psychotic medication for the care of people with dementia

Just read this am pleased to read that ..... [we all learn about the side effect of Radiation Therapy , chemotherapy ].... hoping no one take
offense that I agree more inquiry need to be done on anti-psychotic drugs

 

[Skye]

In my opinion the programme on the anti-pyschotics was somewhat similar. Case studies and then a researcher who found the drugs not necessarily to benefit all.

Hi, EmJ

I think Katie's point, (and I agree with her), is that this is not what happened in the Panorama programme. It focussed on one particular case, which at best would not have proved anything. Also, the programme did not give the full picture of that case. There were important issues which were not revealed.

The research into the use of anti-psychotics was not given sufficient coverage, and there was no attempt to show the other side of the argument.

Although they did show one NH where the drugs are not used, there was no investigation into how challenging behaviour can be managed without them in the hospital ward or in the home.

I still feel that there are many families who are let down by the current system and a lot of it is to do with lack of training and education on dementia. It is important that these issues continue to highlighted.

I don't think any of us would argue with this. It's an important issue for all of us, as is the other issue which wasn't discussed. Some of us just feel that there was a lack of integrity in the balance of the programme.

 

[117katie]

My point precisely, Hazel!

You are spot-on-target, Hazel. That was exactly my feeling about the programme, namely that it was hi-jacked, and the real issues were "skated over" in such a flimsy manner. And yes, I am disappointed that the Alzheimers Society seemed so apparently supportive, or that's the way it seems to me. After all, I haven't read or heard anything from Alz Soc to contradict the programme - not the Expert comment, but the programme itself.

I have been researching further into the stories behind this programme, and the reading is quite revealing, especially when each and every article/report/quote I have read today, back as far as 2005 contradicts the next one. Somewhere along the line, we are not being told what was behind the programme.

My own feelings about the use of any drugs whatsoever will be very different from any other persons feelings - and so they should be; we all have our own experiences of the world we live in. I have not commented on the particular use of anti-psychotic drugs because I have no personal experience of them. Yet!! And I hope it stays that way if at all possible.

But I have to declare an interest in that sphere, which may also show that I am not totally naive about the use of drugs in any shape or form: my own mother was killed as a result of prescribed drugs, at the tender age of 60. She did not even know that she had prescribed an experimental drug - nor did my Dad, and nor did the rest of the family. That drug was withdrawn immediately from use.

I will continue to research the background to the programme - and yes, I am sorry to read today that Eric's family are considering legal action. Of course I feel for their loss - but I also feel for our loss as supportive, caring relatives of people with AD/Dementia. Several million viewers will have received a picture distorted for undisclosed reasons - and that cannot be of any use whatsoever to all those of us fighting for the care of our relatives.

Katie

 

[daughter]

I just found the BBC Message Board:

http://www.bbc.co.uk/dna/mbhealth/F2671774?thread=4850927

Love from Hazel.

 

[Andrew]

What is the Alzheimer's Society doing?

I wanted to put something on the message board about the programme and what the Alzheimer's Society is doing about over-prescribing of sedatives. This scandalous mistreatment really has got to stop.

We are working with politicians to hold an inquiry in the next couple of months to demand action. See below how members of Talking Point can help.

The Alzheimer's Society is pleased that Panorama has highlighted the issue but that doesn't mean we support the whole presentation of it. I don't think everything was presented in the programme and also I would have liked to hear more about the research and the alternatives. However, getting the issue in the spotlight is immensely helpful and I think Panorama should be applauded for focussing on it.

It's absolutely right that there is a place for the use of some of the medications being mentioned. Some of the symptoms can be very distressing for the person with dementia. However, in many homes these drugs are being used to keep people quiet and compliant when good care would actually reduce aggression, confusion and so on. Instead people are being left on these powerful medications for far too long.

The research which didn't get described in much detail showed and many care homes have shown themselves, it is possible to significantly reduce the use of these powerful treatments with the right care. Good care from trained nurses who can support people with symptoms such as aggression and agitation can reduce reliance on these drugs and allow people to have a better quality of life.

When someone is living at home with family on the other hand it can be much more complicated and difficult when crisis happens and people are at their wits end. I think we need to keep the two scenarios separate.

So what happens next?

The Alzheimer's Society has worked with the All Party Parliamentary Group on Dementia (a committee of MPs and Peers in Parliament) to launch an inquiry into the use of these drugs. We have sent a request to lots of organisations to submit evidence about use of drugs, what the alternatives are and what can be done to reduce their use, while at the same time improving the quality of life for people in care homes. The purpose of the inquiry which will take place in January and February is to get an agreed way forward and demand action.

What we also need is evidence and testimony from individuals and families about the use of anti-psychotics in care homes to inform the inquiry. It is absolutely crucial that people understand what the impact is.

If you are willing to give your own personal experience about the use of these drugs in care homes can you please email sthomas@alzheimers.org.uk to tell us.

Thanks and best wishes

 

[EmJ]

I agree with you both (Hazel and Katie) that the other side of the argument was not conveyed. I think what I was trying to explain previously (perhaps not very well!) is that from watching both programmes on ritalin and anti-psychotics the programme seems to use that type of format where they do not convey the other side of the story. They spend the half hour focusing on the one side of the argument.

That's why as I said earlier I felt that more people would have benefited from a tv debate allowing all views to be raised and various experiences to be discussed.

Thankfully talking point allows us to do that!

Take care,

EmJ

 

[Skye]

Thank you for the information, Andrew. I'm glad the society is taking action. I had hoped that the Panorama programme would have been more along these lines, but as you say, it has opened the subject for discussion, and that can only be good.

Is Scotland excluded from this research?