Panorama. Monday 8.30 BBC

[Skye]

John was put on quetiapine when admitted to hospital, because of the aggression caused by 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.

why did they think the symptoms were all down to anti-pyschotics ? - our Mum is like this without any of these drugs

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.

I’m sorry, Nigel, but I have the same misgivings as germain and Brucie. I put John’s rapid decline down to the disease, rather than the medication.

I fully understand why he was prescribed it in hospital, he’s a big, strong man, and was refusing any personal care. For someone admitted with an infection, that’s an impossible situation. He was taken off it as soon as possible, but the decline continues.

I agree with Bruce, I think a more in-depth investigation is needed.

However, congratulations on having the courage to make the programme, and my condolences on the loss of your father.

 

[Margarita]

I miss it last night as I went out ,

so am watching it now on this link

http://news.bbc.co.uk/1/hi/programmes/panorama/default.stm

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

I do find those question interesting as my brother been on those medication for 25 years due to his mental illness not dementia

As constant movement
is a one of the side effect as he contently needs to move walk around so take another medication to compact the side effect

am of now to watch it

 

[daughter]

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 think that is so true, how does a relative challenge authority in a situation like this?

As I have documented before, my Dad was admitted to a mental hospital after being aggressive in his EMI Home. He was taken off his AD medication (Exelon) and put on Haloperidol without informing either my Mum, myself nor his Home, We would not have found out at all if a representative from his Home had not checked the hospital notes.

Since that time we noticed a very marked physical deterioration, not only lethargy. I cannot believe it was just the withdrawal of the AD meds that very quickly led to him becoming very zombie-like and bent over, with his chin resting on his chest. Haloperidol was used until he collapsed 8 months later. Mum and I felt he had just been given up on, there was no review of his meds, despite the Home asking for him to be put onto something milder.

At the hospital we were told that Dad had been over-medicated and he was taken off the Haloperidol. The difference appeared to be immediate. Although Dad had always seemed to know that Mum was someone he trusted and felt comfortable with, he had not shown any signs that he knew who she was for many years. In the hospital he looked straight at Mum and said “Hello xxx” (using the pet name he always used to call her).

Dad died a few weeks later and I will always wonder if there could have been more done to make his last months more comfortable without such a severe chemical cosh. That isn't just guilt, it is a desire for something more humane than what is on offer at the moment.

This was what happened to my Dad. The film showed what happened to Eric. Other people will have different experiences but I think it is important that these stories are told in any way possible so that the subject will get some attention and hopefully encourage a change. Bring on that in-depth investigation!

Whatever the film didn't do, there is no denying it has got people talking about this issue and surely that has to be a good thing. Well done Cheryl and Nigel.

 

[Margarita]

well what can I say , beside nearly having a panic attack , because of past memories of my brother on those drugs and seeing the effect of it on your father that also had on my brother , so I was never going to let them get they hands on my mother when told she had AZ , they would of pump her with those drugs in this country , as now it feel like, that saying they for the grace of god go my mother if I had left her in care home back 5 years ago because my mother away had a bad temper anyway, let a lone with AZ that make her more confused when having a shower



So sad , but you both done so good highlighting it, well done it has done you justice even if you may not feel like it has , because it bring to the attention for future generation of people with AZ how if staff are trained in training for behavior problems for dementia they don't need those DRUGS

 

[Trilobyte]

This was what happened to my Dad. The film showed what happened to Eric. Other people will have different experiences but I think it is important that these stories are told in any way possible so that the subject will get some attention and hopefully encourage a change. Bring on that in-depth investigation!

Whatever the film didn't do, there is no denying it has got people talking about this issue and surely that has to be a good thing. Well done Cheryl and Nigel.[/QUOTE]

Hazel:
You are right. We, as relatives suffered a lot of intimidation and abuse, which I cannot get into for legal reasons, and the system is designed to wear relatives down and take advantage of the powers that they perceive they have. The pawn is always the patient. It is good to raise the issue and hopefully empower others to not just accept what is told/forced upon the patient.

Dementia patients are very vulnerable.
The current system of care provision is designed to take advantage of that. That system and perceived control needs to be challenged and changed.
It is over for my Dad, but hopefully other relatives will think more about what they can do to change and influence what care is given to their loved ones in an more informed environment.
Nigel

 

[Brucie]

Hi Nigel

you have done something very important and extremely brave in raising this through the programme and I want personally to thank you for that.

What people on TP are saying above - me included - is not minimising that at all. We simply want this whole area opened up, now you have given us a new perspective.

Misgivings about the programme don't mean there are misgivings about the raising of the issue! For me, any misgivings are that I don't feel I have been given enough information from all sides, by the programme makers, to enable me to come to any sort of conclusion.

As a member is often quoted as saying "when you have seen one person with dementia, you have seen one person with dementia".

The massive fear we all have that we need to have allayed is that in this case, the quote is not true, because if your Dad's story is universal, it is a living nightmare for all of us - but mostly of course for those who have had the medication.

 

[Trilobyte]

Hi Nigel

you have done something very important and extremely brave in raising this through the programme and I want personally to thank you for that.

What people on TP are saying above - me included - is not minimising that at all. We simply want this whole area opened up, now you have given us a new perspective.

Misgivings about the programme don't mean there are misgivings about the raising of the issue! For me, any misgivings are that I don't feel I have been given enough information from all sides, by the programme makers, to enable me to come to any sort of conclusion.

As a member is often quoted as saying "when you have seen one person with dementia, you have seen one person with dementia".

The massive fear we all have that we need to have allayed is that in this case, the quote is not true, because if your Dad's story is universal, it is a living nightmare for all of us - but mostly of course for those who have had the medication.

Thanks Brucie
Agree with you. My Dad was a fighter, he struggled on when he had been given last rights many times. He is not unique, this is reality for many patients and relatives as was hopefully made clear in the film. Dementia has no cure at this time. But how they are cared for now and the recourse to anti-psychotic drugs to manage and manipulate the care criteria to suit the NHS /PCT system of health care needs to be challenged and changed.
Nigel

 

[CraigC]

Hi Nigel,

I'd just like to add my thanks and respect to you, your sister and father for raising awareness on this issue. It stimulates discussion and starkly reminds everyone to monitor the use of these drugs and to constantly question the people who prescribe them.

I hope that you understand that we are just openely discussing the documentary here to help many of us come to terms with the difficult decisions we need to make regarding anti psychotic drugs. It is no reflection on your father of family who I'm sure many feel empathy and respect for.

All we are trying to get post programme is a little more clarity. Without that many of us are left confused and feeling guilty.

I have one specific question if you don't mind please. What was the name of the home in the documentary that had a 'no-drugs' policy. Just interested in more information on the challenges and how they approach care.

Kind Regards
Craig

 

[Trilobyte]

Hi Nigel,

I'd just like to add my thanks and respect to you, your sister and father for raising awareness on this issue. It stimulates discussion and starkly reminds everyone to monitor the use of these drugs and to constantly question the people who prescribe them.

I hope that you understand that we are just openely discussing the documentary here to help many of us come to terms with the difficult decisions we need to make regarding anti psychotic drugs. It is no reflection on your father of family who I'm sure many feel empathy and respect for.

All we are trying to get post programme is a little more clarity. Without that many of us are left confused and feeling guilty.

I have one specific question if you don't mind please. What was the name of the home in the documentary that had a 'no-drugs' policy. Just interested in more information on the challenges and how they approach care.

Kind Regards
Craig

Hi Craig
Many thanks. It is confusing, and there are many options and solutions. So, its not surprising that many relatives do not know what to do best, but we did not accept what was forced upon us, and for (us) the right reasons for our Dad--quality of life for his last years. Each person must make up their own mind, and this should be done an informed and transparent environment. Sadly, this is not always the case.
The care home mentioned in the film was Spring Mount in Bradford.
Nigel

 

[117katie]

Hello everyone,

I watched the Panorama programme last night, and like everyone else would like to send my sympathies to Cheryl and Nigel, and also to express my own appreciation for raising awareness of several areas of concern to many people.

Like Germain and Bruce, I too have thoughts about the programme itself, and any comments I make are not intended as criticism of your reasons for taking part in it at all. Eric was your main concern, and I support wholeheartedly your right to express your own concerns, and I only wish Eric and yourselves could have had a better few years.

The programme started with an introduction that said that it would "reveal the results of important new research" or words to that effect. So, perhaps like others, I was expecting that research to be more of a feature - and yet, Clive Ballard and his research only featured for about 2 or 3 minutes, towards the end of the programme. Important though those few minutes were, I felt the structure of the programme did not do justice to the several years of his research. So by the end, I was confused as to what the real purpose of the programme was.

Much as we all feel for the particular experience of Eric and his family, I was left wanting to ask for more evidence that any rapid deterioration such as that described was something that could not have happened anyway, regardless of the use of anti-psychotic drugs. I know that, on the balance of probabilities, the overuse of any drug may be responsible for a range of consequences, and I can only cite my own experience: my relative herself deteriorated very rapidly indeed, so much so that, from being fully active, able-bodied, and relatively "lively" in all ways, she withdrew, declined care, became immobile, showed little interest in anything, and in fact, she could hardly take part in a conversation. All within the space of less than 3 months, and without any anti-psychotic drugs at all being prescribed. In fact, in the space of just 2 years, she has become a totally changed person. Part of my own research into her problems has indicated that if her "underlying medical conditions" were not properly managed, then they could all contribute to her increasing dementia. But I won't go into that because they are not necessarily related to Eric, but I did find myself shivering at the thought of the awful ordeal of being creamed 4-times a day, from head to toe, for his skin condition.

Another "programme issue" I have is the use of phrases like "Spring Mount didn't use them" and "there was another care home nearby which didn't use them", meaning anti-psychotic drugs. That for me is a far too "emotive and unexplained" phrase for a respected series like Panorama, which used to be renowned for balanced journalism. As I understand it, drugs of this nature can only be prescribed by a senior medic, not a "Care Home" or a "nurse" or the Owner/Manager of a Care Home. Too much tabloid-journalism there for my liking. Please correct me if I am wrong here - I have no experience of such drugs. And if Care Homes do just hand out the so-called 'chemical cosh' without anyone being able to challenge it ... then that should have been the main focal point of the programme. But it wasn't.

At the end of the programme, I was left wondering whether Panorama "found" the family involved, or whether "the family involved" approached Panorama? Also, I wonder how long the whole programme-making phase was, from start to finish? Months? Weeks? I fear the programme may have done more harm than good, in the sense that it may make an awful lot of people see problems that may not exist in their own case. I did not find it presented a balanced picture. I found the programme to be fairly amateur.

Sorry, but that's the way I experienced it.

Katie

 

[Trilobyte]

Hello everyone,

I watched the Panorama programme last night, and like everyone else would like to send my sympathies to Cheryl and Nigel, and also to express my own appreciation for raising awareness of several areas of concern to many people.

Like Germain and Bruce, I too have thoughts about the programme itself, and any comments I make are not intended as criticism of your reasons for taking part in it at all. Eric was your main concern, and I support wholeheartedly your right to express your own concerns, and I only wish Eric and yourselves could have had a better few years.

The programme started with an introduction that said that it would "reveal the results of important new research" or words to that effect. So, perhaps like others, I was expecting that research to be more of a feature - and yet, Clive Ballard and his research only featured for about 2 or 3 minutes, towards the end of the programme. Important though those few minutes were, I felt the structure of the programme did not do justice to the several years of his research. So by the end, I was confused as to what the real purpose of the programme was.

Much as we all feel for the particular experience of Eric and his family, I was left wanting to ask for more evidence that any rapid deterioration such as that described was something that could not have happened anyway, regardless of the use of anti-psychotic drugs. I know that, on the balance of probabilities, the overuse of any drug may be responsible for a range of consequences, and I can only cite my own experience: my relative herself deteriorated very rapidly indeed, so much so that, from being fully active, able-bodied, and relatively "lively" in all ways, she withdrew, declined care, became immobile, showed little interest in anything, and in fact, she could hardly take part in a conversation. All within the space of less than 3 months, and without any anti-psychotic drugs at all being prescribed. In fact, in the space of just 2 years, she has become a totally changed person. Part of my own research into her problems has indicated that if her "underlying medical conditions" were not properly managed, then they could all contribute to her increasing dementia. But I won't go into that because they are not necessarily related to Eric, but I did find myself shivering at the thought of the awful ordeal of being creamed 4-times a day, from head to toe, for his skin condition.

Another "programme issue" I have is the use of phrases like "Spring Mount didn't use them" and "there was another care home nearby which didn't use them", meaning anti-psychotic drugs. That for me is a far too "emotive and unexplained" phrase for a respected series like Panorama, which used to be renowned for balanced journalism. As I understand it, drugs of this nature can only be prescribed by a senior medic, not a "Care Home" or a "nurse" or the Owner/Manager of a Care Home. Too much tabloid-journalism there for my liking. Please correct me if I am wrong here - I have no experience of such drugs. And if Care Homes do just hand out the so-called 'chemical cosh' without anyone being able to challenge it ... then that should have been the main focal point of the programme. But it wasn't.

At the end of the programme, I was left wondering whether Panorama "found" the family involved, or whether "the family involved" approached Panorama? Also, I wonder how long the whole programme-making phase was, from start to finish? Months? Weeks? I fear the programme may have done more harm than good, in the sense that it may make an awful lot of people see problems that may not exist in their own case. I did not find it presented a balanced picture. I found the programme to be fairly amateur.

Sorry, but that's the way I experienced it.

Katie

Hi Katie
The wake up call for all relatives of dementia patients is that you should not trust senior clinicians in prescribing anti-psychotic drugs as in the best interests of the patient. The film was short and could have been usefully longer. There was much more information available and there was a synergy in thought for producing the film. There is still so much to do and my Dad's case is not isolated.
Your kind thoughts are appreciated.
Nigel

 

[117katie]

Hi Nigel!

We - like you - been fighting for years on behalf of our relative who can't fight for herself. And one thing I have learned from TP in the few months since I came by it, is that we are all fighting hard. Not just challenging the Senior Clinicians, but also the Junior Clinicians, the Social Workers, the Managers, the Care Workers, CSCI, Social Services - and so on. And I know it is a total minefield, but I also feel that not enough questions were asked or answered in the programme.

I do truly appreciate that nothing can change without each and every one of us doing as much as we can to highlight 'problem areas'. Not everybody has that ability, I know.

I realise that it was only a 26-minute long programme, but that's the transmission slot - fixed and rigid. All the more reason for serious radical planning and pruning, which I don't think happened. That is why I think the programme failed.

How long was the programme-making period? Did they find you? Or did you approach Panorama? Were you controlled by the editor? Or was free-range given? Apologies if I appear quizzical, but the programme just missed a golden opportunity.

Katie

 

[EmJ]

Just wanted to add that my family welcomed this programme being shown. It is very important that people are aware that lack of training, time and money may result in some professionals making decisions that may not be the best thing for the person with dementia.

Eric and his family were badly let down by the system and by sharing their story they have helped to highlight the unfair treatment that many people with dementia and their families experience.

My family have also experienced challenges with the system and we learned very quickly about the treatment you may receive if you dare to raise valid concerns. The safeguards in place in some areas are unfortunately not good enough.

The care home in the documentary with the person-centred approach demonstrated that more staff and dementia training can provide such positives. We wish we had access to such services.

Highlighting and discussing these issues is so important because there are so many people with no family or friends to voice concerns on their behalf. They are stuck in this system with no one to help them and that is what I find most upsetting.

EmJ

 

[Skye]

Just wanted to add that my family welcomed this programme being shown.
Highlighting and discussing these issues is so important because there are so many people with no family or friends to voice concerns on their behalf. They are stuck in this system with no one to help them and that is what I find most upsetting.

Well said, EmJ.

We've all had different experiences, some good, some not so good. The programme has given us the opening to discuss the subject, and hopefully it will be under discussion all over the country. Even more importantly, hopefully some of the 'powers that be' will also be thinking about it.


So well done, Cheryl and Nigel.

 

[Brunhilde]

Hiya people!

Watched Panrama yestrday, andAm now confused more cosI thought that Eric Hollingworth's daughter wanted him to stay in hospital while she fought for funding becasue she felt his needs were so great he required full NHS funding.Thought this case sounded famliar. But according to the link below, on the BBCwebsite back on 5th March 2006, she and her brother sharerd enduring power of attorney as far back as January 2004. But the programme portrays them, the daughter in particular, as having had no influence whatsoever over their father's plight. I feel that we have been cheated as many people watching the programme will have not understood the backgruond which I dont feel came across in last nights programme. I know it said that he was in hosp for 2 years because a suitable home could not be found for him. OIr was the reason that as described below in the link:

http://news.bbc.co.uk/1/hi/programmes/panorama/4766752.stm

 

[daughter]

Thank you for the link. I believe that enduring power of attorney relates only to financial matters and would not give Cheryl or Nigel any control over nursing care.

As far as I can see, Cheryl wanted NHS continuing care for her Dad and she was "particularly concerned with the way that anti-psychotic drugs are used to enable patients like her father to be sedated and then classified as in need of only social care."

It seems we cannot know all the ins and outs of the case at the moment because it sounds like it is legally ongoing, but the fact that Eric was eventually in a home and on anti-psychotic drugs would seem to indicate that the NHS continuing care fight was lost and perhaps was taken out of his children's hands?

 

[Brunhilde]

Dear Daughter

Not so, not so. And if you read the link in full it describes soemwone called Kate who knew that enduring power of attorny gave her clout. As did the epa held by son and daughtr in this case. There was no mention in the panorama that son and daughter had enduringpower of attorney before their father was even admitted to hospital. Nor of what steps they had taken to protect their father - by using that epa. And, as we all know, the LPA covering both finances and welfare affairrs has only just come about. So Sorry, but I am not convinced by your argument that we were not all duped by that programme.

These things are too importnt for us to not question - as she said she had tried to do, but failed. Well, where did they go back in 2005 to ask for help? I would have cause more of a stink if i had been that concerned 2 or more years ago!

Brother like me has only just joinged TP!! This very day. Not good enough, but ~I will wait to hear what they have to say - Nighel has been fairly responsive today in replying, so hopefully he will come back once rested. And I know they have lost their father last week, but we all are in smae boat - ours may be gone tommorrow too, as may we ourselves, so today is all we may have.

Answers are needed - by us all, and if Panorama programme can be invited to coment then so much the beter.

 

[117katie]

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!

 

[Trilobyte]

Dear Daughter

Not so, not so. And if you read the link in full it describes soemwone called Kate who knew that enduring power of attorny gave her clout. As did the epa held by son and daughtr in this case. There was no mention in the panorama that son and daughter had enduringpower of attorney before their father was even admitted to hospital. Nor of what steps they had taken to protect their father - by using that epa. And, as we all know, the LPA covering both finances and welfare affairrs has only just come about. So Sorry, but I am not convinced by your argument that we were not all duped by that programme.

These things are too importnt for us to not question - as she said she had tried to do, but failed. Well, where did they go back in 2005 to ask for help? I would have cause more of a stink if i had been that concerned 2 or more years ago!

Brother like me has only just joinged TP!! This very day. Not good enough, but ~I will wait to hear what they have to say - Nighel has been fairly responsive today in replying, so hopefully he will come back once rested. And I know they have lost their father last week, but we all are in smae boat - ours may be gone tommorrow too, as may we ourselves, so today is all we may have.

Answers are needed - by us all, and if Panorama programme can be invited to coment then so much the beter.

It is very simple to answer these questions:
When we needed answers to our plight, the AS was not behind us.
We have moved forward in our way because of what we believed was right and appropriate.
That is how it is.
And I can tell you we tried the other paths.
Nigel

 

[117katie]

Dear Nigel

I need to know which other paths. Please tell me Nigel if only so that I can avoid those "other paths". And also please tell me how long that programme was in the making, and who provided most of the footage and script for that programme, and why you had such importantly effective influence.

I feel enormously sympathies for Brunhilde, and I thank her for her posting of a link, which allowed me to understand more of your own personal family history, and believe me, it gives me no pleaseure whatsoever, because I have been there and am still there, fighting for my 83 year old, but what did you both do with your 4 years of epa, why did it take so long? Please understand me, I don't criticise, I just need to know what avenues you tried and tried to explore, if only so that ~WE ALL DON'T NEED TO BOTHER TO EXPLORE THOSE SAME AVENUES.

Questions still remain in my BRAIN, which THANK GOODNESS, IS STILL WORKING, unlike my 83-year-old-relative's brain.

Katie who has absolutely no smile today, after watching that programme and after reading all the TP comments on that programme.