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What Have the Drugs Done to Dad? - Your comments

As the government orders a crackdown on the use of anti-psychotic drugs among those suffering with dementia, Vivian White reports on the crisis of care.

Care Services Minister Paul Burstow told Panorama that GPs must "take responsibility" and drastically reduce the amount of drugs being prescribed.

He went so far as to issue a deadline of November 2011 and a target of a two-thirds reduction in the amount of the drugs prescribed.

Evidence suggests the drugs - used to control aggressive behaviour - have dangerous side effects.

A leading GP said most doctors agree that their use needs to be curtailed.

Mr Burstow said the evidence for cutting their use is compelling: "It kills people. It cuts their lives short. It reduces the quality of their lives. It is now time for those responsible for prescribing to take responsibility and cut the prescribing, and make sure we improve the quality of life for people with dementia."

We welcome your comments on What Have the Drugs Done to Dad?

Please use this forum to tell us your thoughts.

If you or anyone you know is affected by the issues raised in this programme, please feel free to contact one of the organisations listed here.


  • Comment number 1.

    With an oversubscribed health service staffed by understaffed care homes motivated by profit more than care and pharmaceutical companies looking to claim more money we all need to look very carefully at the axe that hangs over our public services. Care not profit.

  • Comment number 2.

    Why is nobody talking about payments from pharmaceutical companies into doctors' back pockets in return for prescribing their companies' drugs?

    In the US this information is published (as Panorama's recent investigation into Avandia revealed), so why can't we have similar transparency in the UK?

    Doctors' large salaries are paid exclusively through our taxes and so they are accountable to the public in the same way as MPs are accountable to their constituents.

    I see it as insulting as well as a conflict of interest that doctors are even allowed to receive payments from pharmaceuticals in return for prescribing drugs.

    The only factor that should influence whether a drug is prescribed is a medical professional's judgement of the patient's circumstances, not the cash incentive for doing so.

    I look forward to Panorama investigating this issue.

  • Comment number 3.

    This is a growing concern and I'm so glad its becoming more talked about.
    I worked in a specialised dementia care home in chesterfield and that home did not encourage sedatives or anti psychotic drugs, instead alternative therapies and person centred care is used to control behaviour and care. I believe this is why many residents thrive in this home.
    I believe this is the way forward.

  • Comment number 4.

    my ex wife was prescribed both risperidon and klonazapam with zopiclone. this is after the known effects of strokes. she had a stroke and was crippled by being unfound lying in her kitchen for 65hrs. when emptying her flat i found a suitcase full of these three drugs. all delivered to her flat over a period of 18mths, this was in excess of the drugs she actually took

  • Comment number 5.

    I would like to see a similar report done on the wider use of anti-psychotics for people with mental health and personality difficulties. I have known many people over prescribed to zombie characteristics, for many many years, just so no-body had to face their behaviour.
    Care homes and facilities have to change, but so has the greed and might of the drugs companies, the attitude of compliment prescriber's and more pubic awareness.

  • Comment number 6.

    Even with budget cuts, it takes small changes to make care better for people with Dementia. A better understanding of Dementia and the impact that the environment has on someone with Dementia. Care Homes have no excuses to improve the Care they provide. Sedatives are seen as a "quick fix" by GPs and people are too quick to blame everything "because of their dementia". Look at the symptoms of pain and challenging behaviour - literally the same. People forget that people with Dementia are usually old and have she same aches and pains of someone without Dementia. The difference is they have lost the ability to know where the pain is and how to show it.
    No excuses - small changes - a big difference on peoples lives.

  • Comment number 7.

    This programme is sadly misportrayed. People with dementia are VERY difficult to deal with, particularly if you are close to them. My mum had Picks disease, a form of early onset dementia and we sadly lost her, finally, in January this year. She was cared for at home almost (all bar a month) to the end. Her behaviour (aggressive and repetitive) was indeed subdued by drugs and if it hadn't been then maybe we may not have coped for so long. From my own point of view, having watched,and helped my mum (and dad) go through this process and knowing that it may well be genetic, I have no issue what-so-ever with any of the drugs issued. Does it dull their senses and change the person? We'd already lost her! If it happens to me and it shortens my life, then that's more than ok too!

  • Comment number 8.

    These drugs should be BANNED some care homes and NHS units use them as a shut up and put up way of 'dealing' with dementia/alzheimers.

    My grandad went through a horrible down hill slope in a unit (not a care home) that was supposed to take care of him (under our strong resistance) until finally we were allowed to find him a home that has a very well practiced policy of not asmintering these drugs. He only lived a short life after this but without these drugs in the time spent in this unit I BELIEVE he would have lived longer.

    EVERYTHING deteriarted so fast on them it was frightening to watch. He was eventually drugged up so high he wasn't able to lift his head or walk without assistance. He was in capable of so many things that whilst at home with my grandma just a short time before being moved to this unit he was able to do.

    The more people are aware of this hopefully it can be stopped!!
    It needs to be!!

  • Comment number 9.

    My brother in law has Down's, had a stroke in 07.

    Wee man is now on Lamicatal to counter risk of seizures/epileptic fitting post stroke but is also on Aricept for dementia & an anti-depressant both of which lower the seizure threshold.

    We know the benefit of 1-2-1 support in countering depression & in countering impacts of dementia but trying to persuade professional that there is a solution other that drugs is an uphill task.

    My respects to those who have appeared on the programme & told their stories, it takes guts & determination to take on healthcare professionals

    I can't held thinking that there is real scandal lurking herein relation to folks with learning disabilities who cannot speak for themselves & who maybe no longer having living relatives - as this community lives longer so the problems increase

  • Comment number 10.

    Haloperidol has very bad side effects such as stiffening of muscles which can be excruciating. I know this because I have been prescribed Haloperidol, and know other people who also have experienced the severe side effects. What worries me the most is that people with Dementia cannot speak up and tell anyone how bad these drugs actually make you feel.
    You can hardly move, talking and making sense is extremely difficult, you may look quiet and relaxed but inside you are in agony.
    There are medications to relieve these side effects such as Procyclidine, however getting doctors to admit that these drugs have side effects is often impossible.

  • Comment number 11.

    My mother was prescribed Haliperidol when in a care home some 7 days after she was admitted whilst on respite care whilst my Father was hospitalized. I was appalled that the home had called for a Doctor to "calm" my mother down. I could not believe what I saw, total numbness, dribling, unable to string a sentence. I took action and instructed there and then they get the doctor on the phone, told him that my mother was no longer to take this medication and shortly moved my mother to another care home that does not believe in this type of medication! I cannot believe after the programme tonight just how many doctors are using this type of medication on patients with dementia. My Dad has vascular dementia now and both are in the same care home. Sometimes one or the other has bad days but music and attention are the best way to deal with their outbursts of frustration. Its all very sad but these drugs are not what is needed in their final years.

  • Comment number 12.

    my father suffers from dementia,he was diagnosed in 2007 after attending a memory clinic for 3 years, he is now in a nursing home,ive had to watch him suffer,ive had to fight for him all they way, and in the end the system wins,ive lost my fight,and lost my dad.

  • Comment number 13.

    I work for a service which deals specifically with Alzheimers and dementia, and as a secretry, I am responsible for informing the GP's of the decision our specialist consultants have made, from suggestions of care to the prescription and reduction of medications.

    I am proud to share that I have never seen the prescription of antipsychotics from within our service; if anything I have only ever witnessed the instruction to the GP's to gradually taper and stop the use of two of the main drugs mentioned within tonight's program (amongst others).

    Although I agree with the warning Panorama has given out, I am curious as to why it didn't discuss the other medicatons which are prescribed to those who suffer this illness - why was it all doom and gloom? Why couldn't it be "This is what has been happening, and unfortunately still is, but some places are changing and prescribing these other drugs which are better and have not been proven to be life threatening and can actually improve the quality of life"?

    I feel very strongly about the the service I work for and the positive effects of the medications we prescribe, and I cannot help but feel that the program did not display the bigger picture of what is actually out there.

    Overall, tonight's Panorama gave the impression that "if you have Alzheimers, you'll only be given these drugs and there's nothing you can do about it".

    May I suggest you show the other side of the coin?

  • Comment number 14.

    Lets hope the Government .. keen to save money dont disband teams set up to support Quality care in care homes . Its well documented what antipsychotics can do and hugh amounts has already been done to ensure that antipsychotics are appropriatly perscribed, reviewed regularly and discontinued for those who it is inappropriatly perscribed for.
    The new GP Consortiums when they come in to being would do well to invest in this kind of team.

  • Comment number 15.

    Having worked in the health care sector all of my adult life i have seen little change in how we care for older persons with the dementia. I agree that the use of drugs should be reduced dramatically. I now work as a team manager for a training provider to support and improve the care practices of those working in residential and nursing homes, however the continued challanges the homes face in relation to staff recruitment and retention prevent the care homes delivering a quality of care the residents so deserve. Good quality care costs, the health care sector needs highly trained professional carers. Care practices do need to change using the principle of centred person care, `actions speak louder than words'. DG

  • Comment number 16.

    All of this re-enforces the crucial nature of Writing Lasting Powers of Attorney Health and Welfare to ensure that the family have some control over medical issues should the need arise.
    Advance Directives can be used for the same purpose but are restricted entirely to medical issues - not covering (for example) which care home the relative is kept at.
    When Alzheimers is diagnosed it is often still possible to write Lasting Powers of Attorney as long as you don't delay until mental capacity has been lost - but few solicitors are keen on writing Health and Welfare LPAs

  • Comment number 17.

    my husband was admitted to hospital in august, he has got worse since being there.now he dribbles, does not talk , has to be encouraged to eat and drink.he is now walking so slowly a snail would win a race with him.he is medicated once like a zombie. im now going to find out if he is on these drugs. i could tick every box as the lady spoke of her husbands sympoms.saying to my self this is what my husband is like.they are now saying he has had a stroke.

  • Comment number 18.

    My mother-in-law was diagnosed with Alzheimers 1n 2002 at the age of 82. My wife and I decided to look after her at our home. Her behaviour gradually became more aggressive and we found it difficult to cope. She went into a Care home for respite in 2006 to give us a chance to have a holiday. An incident took place in the care home whilst we were away and she was placed in a psychiatric ward where she remained for treatment for 11 weeks whilst the staff there sorted a treatment regime. She came back to us a different person. She was back to her old self. No aggression anymore and few sleepless nights, as long as she took the anti-psychotic drug (two of the same brand each day.) The dangers of taking the tablets over a long period were explained to us. We thought it was a risk worth taking. We have had another 4 years of quality life with her. She has been able to fully participate in activities and all our lives have benefitted from reduced tension. The only hiccup we had was when she broke her hip and the local hospital stopped her having the drug sending her into cold turkey. ( It is true-do not stop without medical advice.)They were absolutely useless at dealing with her Alzheimers- but that is another story!
    In the programme it said that only 1 in 5 benefit. We must have been lucky and we were fortunate that the assessment she had was very thorough. I do hope however, that this serves to offer some balance. The programme did not show any examples of people who have benefitted.
    Having been in some Care Homes in another capacity I also think it needs to be remembered that residents arrive there often when their relatives can no longer cope. They see a deterioration that would have taken place anyway. Some residents behaviour can frighten other residents and make the life of the many worse. Behaviour and calming drugs may be the only practical answer. From the cradle to the grave we use restraint to maintain order.

  • Comment number 19.

    My huaband who has Vascular Dementia was prescribed Stelazine for aggression six weeks ago, and he immedietly started drooling, his head was down and he slept most of the time, he had a head injury some 18 months ago so walking was difficult, but after taking the tabs he was unable to walk, I stopped the tablets last week and he is getting over the symptoms slowly, but the aggression is back, but at least he is not like a zombie now.

  • Comment number 20.

    My mother suffers from dementia and I had to admit her to an EML Residential Home last November for her safety. My mother has NEVER taken any sort of medication at all apart from a small steroid tablet each day for the last five years because of polymyalgia. This last February, my mum was finding it difficult to sleep and the Residential Home said she needed some medication. I fought and fought and told them they would have to 'manage her needs' if she got up during the night. After she had been up for nearly 10 days and 10 nights, I agreed to a sleeping tablet being prescribed. The Home contacted her GP Practice and I was told that she had been prescribed some medication. It wasn't until Easter Saturday when my mum had what appeared to be a stroke. I was visiting her with a bottle of whisky and a huge easter egg but when I arrived I was told she was in bed because she didn't feel very well. As soon as I saw her, I ran for help and an emergency ambulance was called. The paramedics were brilliant and treated mum as if she had had a stroke. Four days later and still in hospital, the doctors there could find no bleed or clot and said mum's 'turn' had been drug related. I since found out that the sleeping medication my mum had been given was haliperidol, not a sleeping medication at all. From that day, my mum has not been able to hold up her head, her chin is constantly on her chest, even when she sleeps. In July, the Residential Home said they could no longer manage my mum's needs and she has been moved to a Nursing Home. She takes only her steroid and one small dose of a sleeping tablet to help her sleep at night, her chin is still on her chest and I am now starting the long fight to find out why my mum was given medication such as haliperidol when all I agreed to was for her to be given something to help her sleep. Since suffering from dementia, my mum has never been aggressive, foul-mouthed, in fact she was just very confused and very scared.........I will continue to fight for my mum and any ideas on how I can pursue this would be most welcomed.

  • Comment number 21.

    My Husband who is in tempoary care had his Dementia drugs stopt by a G.P., not weaned off as expected would be the correct practice, to be replaced by the anti psycotic drug Haliperidol. The G.P. didnot consult us regarding the withdrawal of the dementia drugs and he had been taking them for 5 years. The effects of the Haliperidol were unreal, sweating fever like,uncontrolable jerking, couldnot talk or open his mouth properly, mobility and balance were effected and most of the time asleep with his head bent downwards. These drugs should under no circumstances be used for alzheimers patients, they are life threatening and dangerous. They are used for a quick fix and mask other problems that are going on.

  • Comment number 22.

    First of all congratulations to the team of Panorama for highlighting Dementia and the poor people who have no voice when it comes to this awful illness. It is not only the silent ones who suffer its the carer's too.
    We as carer's do not seek reward we just want our loved ones helped and treated fairly, not only from the families but doctors and anyone else connected with Dementia.
    It is appauling how a drug becomes the norm to shut the patient up and make better the lives of nurse's carer's and doctors, shame on you, the ones who prescribe this.
    My mother has Vascular Dementia and I have fought a good battle to help her, the GP did prescribe Haloperidol and within a week my mother was on another planet. I telephoned the Dr and we decided there and then to take her off it. I am so glad I did even though I knew nothing about this drug. The GP commented that it was used to "quieten down people".
    I strongly believe there is a need for GP's to be more aware about Dementia, I think they are experimenting and not really knowing what a person with Dementia goes through. Its like a daily battle with the brain and the brain is so strong. Carer's need to be aware too as well as workers in homes and such places.
    Then, we move up the ladder to the Government who should pull out all the stops and put money into tackling this dreadful illness. It is estimated about a million people in 5 years time will fall to this illness, so come on MP's of all parties get this sorted now, you never know, next it could be YOU!

  • Comment number 23.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 24.

    The care home my mum was in administered promazine anti-Psychotic drug, deliberatly ignoring my requests that she was not to be sedated under any circumstances without consultation with me first.For three months i saw her deterioration, she was like a zombie.When i questioned the home if any new medication had been introduced they denied it, and put her condition down to the alzheimers progressing. She died suddenly, the doctor said this was her heart.( she had angina and should never have been precribed this type of medication) I found out subsequent to her passing about the medication she had prescribed via a locum doctor. When i challenged the care home they said the Dr prescribed the medication, when i challenged the Dr he said the care home told him my mum had been aggresive and abusive and needed calming. At no stage was this discussed with me, despite it being on her notes this was required. I was so upset that they could make these decisions about my mum without consultation. After numerous letters to the Dr, Care Home and CQC no measures were taken to prevent this happening again. The care home took the easy option of managing my mum, which resulted in her premature death without any consequences to them or the DR.

  • Comment number 25.

    24 - Sorry to hear that, sounds awful. Have you spoken with a good clinical negligence solicitor? I think that would be helpful to make sure the same mistakes aren't made again.

  • Comment number 26.

    I Only caught the end of the programme but intend to watch tomorrow. I am very worried because my 10 year old son is on anti psychotic drugs. He has a complex diagnosis of many different disorders including ADHD. He is aggressive and was prescribed Aripiprazole also know as Abilify to control his aggression. He started having speech difficulties which was caused by his tongue stiffening because of the meds. He was then prescribed an antidote to this side effect. He has regular blood pressure checks.
    Recently I ran out of his meds and noticed how different he was. He became the cuddly little boy he used to be when he wasn't having one of his bad days (when he is aggressive)I didn't give him his meds for 2 weeks but today we had a bad episode where he attacked me (his mother) he punched me several times and had to be restrained by my husband (his father)I don't like him taking the meds but I don't know what else to do. I am disabled with Fibromyalgia and find it hard when he has bad days.We have not been offered any other form of help with him. I think he needs some kind of therapy to teach him how to manage his temper and to help him find coping strategies but I don't know how to get this for him.

  • Comment number 27.

    I am very very upset by this topic, every time I am confronted with it I start crying, as I am overwhelmed with memories of feeling totally usless and powerless to help the one person in my life (my Father) who had always been there for me. It was like all rights had been taken away, I wanted desperately to run away with my father so that I could look after him myself. I feel a crime has been commited by all the people involved in the care and welfare of my Father who had vascular dementia and the sheer hell that he and all the family endured while he was in the care of the so called medical profession! and the atrocious care home, where he eventually succumbed to his unfortunate drug induced untimely death. There are so many memories of neglect, degredation, struggle, frustration, anger and so many arguments and tears and of being so badly let down by the system and humanity.

  • Comment number 28.

    My father was admitted to a geriatric assessment unit and was given respiridone. His physical condition rapidly deteriorated. When I expressed concern at his condition I was told that this was symptomatic of dementia. He walked with a shuffling gait, he dribbled, he was incoherent and most distressingly for him his childhood stammer returned. I remember quetioning a doctor about what the drug was for ("to control his mood") and when my father attempted to contribute to the conversation his stammer kicked in. The doctor pointed this out to me as evidence that he was "clearly demented". I will never know whether he really was suffering from dementia (or how serious it was if so) or whether his symptoms were a result of the drugs. As a layman, you tend to trust the medical profession to do their best for patients and don't have the expertise to question their actions. My father was prescribed all of the drugs mentioned during his care by geriatric psychiatric services. As the lady in the programme so eloquently stated of her father, the drugs robbed him of what mental capacity he had left. He died after several strokes in 2008. I feel that I failed him by not protecting him from these drugs.

  • Comment number 29.

    The whole system of health care provision is poor for patients suffering from dementia. Social services are over worked and cannot cope, doctors and consultants take little or no interest and don't keep families informed regarding patients conditions. My father is currently receiving "assessment" following admission to hospital on the west coast of Scotland. He has now been in the unit for 2 months and the consultant refuses to provide details of my fathers case. He has been prescribed anti-psychotic drugs and is often incoherrent when I try to speak to him. The drugs are only one issue - the whole approach to treatment and care needs a fundamental re-think.

  • Comment number 30.

    Thank you for showing this programme and highlighting the psychiatric abuse which takes place in the treatment of the elderly.
    Unfortunately exactly the same thing is happening to autistic children and adults in care homes - and in the community. Please can I beg that BBC panorama does a similar programme on psychiatric drugging of the autistic community?

    My son has late diagnosed Asperger syndrome, and to date he has been tried on these anitpsychotics; Olanzapine, Haloperidol, Quetiapine, Chlorpromazine, Stelazine, Clopixol, Risperdione, Clozapine, etc etc. Plus of course SSRI antidepressants for 9 years [they made him go manic and psychotic] Also Zopiclone and benzodiazepines, including Valiuim and Lorazepam. Often these drugs were administered in cocktails and sometimes via depot injections.

    People on the autism spectrum cannot process toxins efficiently and these include drugs. We need this abuse to be made public as soon as possible.

  • Comment number 31.

    Anti-psychotic drugs do carry side effects even in low dosages in elderly and particularly elderly with dementia. However I feel that the Panorama programme failed to present the issues in a well balanced manner. I am sure majority of old age psychiatrist around the country follow NICE prescribing guidelines for BPSD (Behavioral and psychological symptoms in dementia) and drug treatment should only be reserved as a last resort. Dementia is a progressive degenerative condition and it brings plethora of symptoms which could include extreme degree of agitation, aggression, psychotic symptoms, neurotic symptoms etc. When all else fails, antipsychotic drugs certainly does help. However at the same time their use if prescribed need to be closely monitored. These days care homes are also getting bit tight on which patients to accept or not and obviously they are not positive about challenging behaviour patients.

    What a sad state of affairs and unfortunately BBC has failed to involve old age psychiatric services to provide a balanced view on this.

  • Comment number 32.

    I agree with victor0768 on the point that the BBC have not addressed these issues in a balanced manner, in fact I felt as a senior nurse working with acutely unwell people and their families for the past 10 years, it actually did not portray any arguement nor factual programme at all!!
    the programme did not explain the symtoms nor potential presentation of people with dementia, it did not explain the causes of dementia, it did not offer nor suggest possible alternatives for the treatment of behavioural disturbance, it portrayed services for people with dementia as being only to 'dose'
    the 'home' explicitly stated we have no anti-psychotic medication but then stated the use of anti epileptic and anti depressant medication which also have a sedative effect !!! actually I was appaulled

    please don't show care of people with dementia in such a negative and clearly unresearched way again.!
    I am not advocating the use of anti psychotic drugs at all and any and every health care professional will tell you that this is un acceptable but a person with dementia is a person and an individual that deserves individual treatment !

  • Comment number 33.

    I thought the programme was excellent. Paul Burstow MP is wonderful for struggling for so long to bring this shocking and widespread issue to light. The House of Commons was practically empty when he was shown in the film speaking about this subject, and yet he never gave up despite the apparent lack of interest by most politicians. We are all very fortunate that he is now Minister for Care Services.

    I hope a programme will be made soon by Panorama about the prescribed drugging of learning disabled children and adults of all ages in residential care homes. In some ways the drugs are even worse for this category of people because they have their whole lives before them and could have made some progress physically and mentally if their potential had not been stunted by these disabling drugs. Huge numbers of learning disabled people are taking these drugs, which is successfully being covered up by "Patient Confidentiality"

    My son was a charming, non-violent, compliant, quiet, happy, physically fit, learning-disabled autistic young man when he was first given psychiatric drugs in a residential care home where he had gone to live to learn "independence" upon leaving school. Within his first year there he was injected with an anti-psychotic drug by an on-call GP without my knowledge or consent. I was first told about that first injection a few weeks later at my son's routine review meeting. Apparently the GP had been called to the care home during an argument between my son and another resident.

    His deterioration after that first injection was was rapid and massive. I knew nothing about about psychiatric drugs at that time. Although I was very worried and fearful about them, I failed to realise the serious long-term damage that these drugs cause. I assumed and hoped that my son would "pull out of it" (whatever "it" might be).

    My son's ensuing depression and inertia, which I am now sure was drug-induced, led to his being prescribed a tricyclic antidepressant Dothiepin, on top of an antipsychotic Largactil (chlorpromazine). The psychiatrist said that my son was not capable of participating in counselling. (Of course not - he was too drugged!) His behaviour descended into a chaos that I had never seen before, interspersed with coma-like states. A low dose of the antipsychotic haloperidol (Haldol) nearly killed him and was the worst drug of all.

    After 4 years I removed him permanently from the care home; much later than I should have done because, even then, I did not realise that his massive deterioration was almost entirely drug-induced. It was only when I tried to wean him off all the drugs myself at home that I could tell that his problems had been drug-induced. By that stage he could no longer do anything for himself. The irony was that the reason he went to that care home, paid for by the State, was to learn "independence"!

    15 years have gone by since I removed him from that care home, and he has been a shadow of what he was in his pre-drug days when he was a star pupil at a special school for autistic children. He is still taking a low dose of an antipsychotic (due to drug dependence). His autism has been permanently worsened by the drugs and he needs a far greater level of care, provided by myself and the State, than he ever would have needed if he had never been prescribed psychiatric drugs.

    It is impossible to exaggerate the awfulness of these drugs when given to people such as my son whose fragile metabolism cannot tolerate them.

  • Comment number 34.

    Thank you for showing this programme. I agree with most of the comments I have read and wish to add that these drugs are also being given to young brain damaged people. Perhaps it would be a good idea to do a follow up to show that it is not only the elderly that are given them

  • Comment number 35.

    What an excellent programme. Three cheers for Paul Burstow. He clearly understands the damage, both mental and physical, antipsychotic drugs do to people with dementia. My father suffered a similar fate in a care home in the late 80s/90s. Fortunately for him he only survived in the home a short time even though he was previously a very fit and active person who enjoyed ballroom dancing several times a week.

    My adult daughter, however, has not been so fortunate. She has Asperger's Syndrome, the more able form of autism, more able that is until she was prescribed antipsychotic drugs. In her twenties, she had a full-time job, drove her own car, had a small circle of friends with whom she often went on holiday, had a generally happy, healthy, active life and was a respected member of society. Now after 20 years of forced drugging, she is unrecognisable as the person her friends and family once knew. These prescribed drugs have destroyed her life, her health and her reputation and she requires 24 hour care. Worst still, her's is not an isolated case and now, adding insult to injury, the Government wants to take these iatrogenically damaged people off benefits. So many young lives have been destroyed by antipsychotic drugs which, as research has shown, do actually cause dementia.

    Forced drugging of dementia patients is only the tip of the iceberg. I hope Mr Burstow understands the cost to the Nation, not only in human terms, but also to the NHS. I have spent many years writing to respective MPs concerning this, all of whom failed to understand.

    Mr Burstow is the Minister for Care and that's what NHS money should be spent on, care not drugs, for vulnerable members of society. This way they could be part of society instead of isolated from it.

  • Comment number 36.

    The question to ask is "What if I had behavioural difficulties with advanced dementia? Would I agree to be prescribed these medications?" My answer is (and it is very personal but it is also after closely experiencing many many people go through this, including very close relatives) YES. I would rather have olanzapine or quetiapine which may increase risk of stroke or hasten death rather than suffer myself and be a cause for immense emotional pain for others. I would probably try to avoid older antipsychotics due to side effects.

    I was disappointed with this programme.

  • Comment number 37.

    After watching this program it made me realise yet again how mis-understood dementia is by doctors. My father was put on olanzapine at 57 yrs of age with a diagnosis of paranoid delusional disorder by a GP, a year and a half later he was then diagnosed with vascular dementia. He was kept on the olanzapine for over 4 yrs until the care home he was in began to struggle with his behaviour and requested the consultant to come out. This was April of this year, the consultant then informed me he should come off the olanzapine as it is likey to cause TIA's in people with vascular dementia, gradually he has been brought off it. All of the symptoms described on the programme my father showed, and although im aware that vascular dementia can have major declines at times i believe now that being on olanzapine affected him more severely. He is now 63 yrs of age and in a Nursing home, he has a slight spark in his eye now which i put down to being free of anti-psycotic medication. Has he just been a guinea pig for the company that produced this medication, or was he just forgotten about by the GP and each admittion to the A&E dept at the local hospital due so severe TIA's ignored. I feel so angry.

  • Comment number 38.

    What is not generally known is that (like cigarettes) these drugs actually cause a need for themselves in so called psychotic patients (a very lucrative practice). How it works is that these drugs stimulate the release of endorphins Which go to "keys" in the brain called endorphin receptors. It is probalable that all stimulants which "give you a buzz" such as alchohol (the DTs) Canabis and KAT (far east chewing leaf) all do a similar thing. When the endorphin receptors are all full then the loose endorphins cause psychotic behaviour (as does alchohol when drunks see pink elephants - the Delirium Tremors (DTs). Then the patient is given even more of these drugs (very lucrative for the drug companies).
    If you come off these drugs (as I did) you go "cold turkey" and exhibit very extreme symptoms, but these pass eventually and you become normal again.
    Perhaps you will recognise that I admit to showing drug induced spychotic symptoms and so I am not trying to escape from the things these drugs did to me and I did, as a result of the drugs. I feel that this shows I can be self critical and objective.
    If you encourage someone to come off antipsychotic drugs, watch out - they will go through a very bad stage where they may need physical (not drug) restraint, but slowly they will return to their previous selves.
    In the Far East, where these drugs cannot be afforded, the incidence of mental illness is the same as here.
    Even mild drugs like prozac can do this (read the literature).
    I have exhibited no symptoms for over 7 years since I came off these drugs and I am reasonably sure I was never ill, but I paid too much heed to well meaning people like Zito's wife, who I feel is well meaning but missguided, perhaps if the man who killed her husband had never been given these drugs he would be alive today (I never killed or hurt anyone, just delusional)
    I go out on a limb to tell you this - the reaction and the price for saying it is very extreme - I am paying it now, but that is another story.

  • Comment number 39.

    I am inclined to agree that patients are being subjected to stealthy medical testing tactics which we have no control over until something is brought to light.

    I personally have been in the care of the NHS but not for psychiatric care, it was for a gall bladder problem, totally unrelated to dementia, in my late 40's I was mis-prescribed olanzapine whilst in hospital, suffered hallucinations and paranoia for days until I eventually escaped the clutches of the NHS by discharging myself with the help of my wife, who I dearly thank.

    Luckily I was not on the drug long enough to have a lasting effect on my mental ability, these anti-psychotic drugs should be banned. You can guess how much I want to go back into that hospital again! Not a chance if I can help it.

  • Comment number 40.

    The incidence of violence is related to the level of justice. People don't want to be angry, desperate, or violent. When you don't like the level of violence, instead of drugging the population (especially kids), try reviewing your social policies. When the rate of ridlin prescriptions increases, it's not because the mothers are home saying, "listen, here's how you can get away with hurting your friends", it's because the classroom is overcrowded, bullying is permitted, the teacher's marking the wrong answers right and the right answers wrong (I saw it done here in the states), and in general, society is breaking down. Drugs are not the answer; drugs are just enabling the decision-makers (are they fools or intentionally victimizing?) to cover up mismanagement and injustice. I don't believe in forcing someone to use drugs. If you get too many people in jail, change your social policy, lower your requirements, stop letting so many people take so much off the top. Reward based on merit, not victimization.


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