Sunday, 20 October 2013

Over Medicated To Death

We were a family of five, Dad was an entertainer, Mum an office manager, then there was Carole, the eldest, followed by myself and our younger sister Valerie. I remember how happy we all were. The house was always filled with music and laughter. Until one day, Carole went to the local garage which also served as our local sweet shop, but she nver came home. The police were called a search for her began. I had never seen our Dad cry before but he could not stop, neither could our Mum. The police found Carole's bike. It had been tossed over a hedge, but, no sign of Carole. This made our parents worse. The house was so quiet. It was eerie. Ten days later the call my parents had been waiting on finally came. Carole had been found alive. We stayed with our gran while they went to bring Carole home. Our gran had put us to bed at the usual time and I remember our Dad coming to wake us up when they all got home. There was a lot more crying but they were tears of joy, not sadness. Our big sister was home.

Things would never be the same after that though. Our bubbly happy outgoing sister had become very quiet and withdrawn, choosing to stay in her room alone rather than join in with everyone else. I remember asking my parents about what had happened to her and they told me that some bad men had taken her and been bad to her. They said she needed time to get over it. Carole was ten when this happened and I was only eight. I now know that Carole had been kidnapped by three men who held her and repeatedly raped her before dumping her under the Tay Road Bridge in the middle of winter. She was naked, cold and terrified. Luckily she was found by a man who had decided to go fishing.We had been living in Fife when this happened and our parents decided that moving back to Dundee away from where it happened would help, so, that's what we did.

Back in Dundee things didn't get any better, in fact they got much worse. We were enrolled in a new primary school and it came to light that Carole was being locked in a cupboard by her teacher and called filthy names. The teacher was sacked but, no charges were ever brought against her. 

Carole continued to become more withdrawn and I remember her saying one day that she was going out. Hours later. when she still hadn't returned home, that same panic began. I heard our Dad screaming "Oh please god not again". Once more the police were called and a search was underway. That same eerie misery fell over the house again. It got too dark to continue searching and the nest day a helicopter was brought in. Thankfully she was found quite quickly and brought home. She had been found on the Sidlaw Hills. She said she just kept walking and when she raised her head up she realised she was lost so, she found a place to shelter and waited out the night. Things got really bad for Carole after this and the doctor said she was having nervous breakdown due to the stress and trauma she had been through. He suggested putting her in Dundee Royal Liff Hospital. This was the only psychiatric facility in Dundee at the time and our parents believed that they doctor knew what he was doing. 

Carole was the only child in there. I remember going up to see her and she'd had her nose broken by another patient. On another occasion she was sitting in a chair with her head hanging down into her chest, she was drooling and sitting in her own urine. The nurses told our parents that she had been given her medication twice in error and they just hadn' had time to take her to the toilet. Other times she would be so hyped up that she would march up and down the ward speaking to people that onlt she could see and hear. Our parents stopped taking her up as it became to upsetting for us. 

Years later Carole got a new doctor and he said to our parents that he thought he may be able to get her out of the hospital. They jumped at the chance and sure enough, a short time later Carole had been diagnosed with manic depression (now called bipolar), and she was back home. The doctor had priscribed Priadel and Methylene Blue. We had Carole back again. She was like the Carole we knew before. She would have good and bad times and have various stays in the hospital throughout the years but, she was much better and we were happy to have her back.

Around 2004 Valerie moved away. She said that she wanted nothing more to do with any of the family. This came as a bit of a surprise to us as there had been no arguements, but, we could not stop her. 

In 2010, I called Valerie to let her know that our mothers condition had got much worse and she did not have much time left, I also told her that she had been housebound for years. I thought she may want to make her peace. Instead the first thing she did was, call the social work dept. to tell them that, I was 'untrustwothy' and should not be operating Carole's finances. There had been a power of attorney drawn up in 2003. Our mother and Valerie had been jointly appointed to act in both financial and welfare decisions. Valeries copy had never been signed and so should never have been accepted. Despite this, due to the allegation that I was 'intrustworthy', I was made to hand over all of Carole's affairs to her. I did point out that, Valerie had broken all of the rules as set out on the Office of the Public Guardian website and that she knew nothing of Carole's recent history, this made no difference. Approx. 6-7 weeks later Valerie had decided that she no longer wanted to be attorney after all and I got everything back. Carole said that she was happy with this too as she never saw Valerie. Our mother passed away on the 12th December 2010 and a few days after this I was again told that I had to give everything back to Valerie. I protested that she could not just keep changing her mind when it suited her but this made no difference either so, again I had no choice. 

Before Valeries return on the scene, Caroles doctor had asked me what medication had worked best for Carole. After I told him, he said that he could not put her back on priadel as it could kill her. Carole had stage 4 kidney disease and stage 3 liver disease. He did however apply to have her back on Methylene Blue. He had to apply as it had been withdrawn from use in mental health. His application was granted and Carole was now getting the drug. Due to this I felt confident that Carole would improve and be out of the hospital in no time. So I felt that things would be ok and sure enough in January of 2012, we were told that Carole was fit for release. 

It had always been known that Carole wanted her own place, but, the type of supported accommodation she would need was not a feasible option at that time. I knew it could be years before there was anything suitable so, I explained this to her and gave her some options. Those were:-

  1. Stay in the hospital.
  2. Live with me or
  3. Live with Valerie.

She said she wanted to stay with me. She also asked me if she 'still had plenty money'. I reminded her about the power of attorney and she said she wanted to change it to me, she said 'I never see val anyway'. I said I would check with her doctor to make sure it was ok. He said she was fine to instruct a solicitor. The solicitor I called was told the same thing when he called to confirm this was the case. One of his colleagues then went to see Carole and take her instruction. The day after this had happened, I got a call from Carole's doctor saying that, after speaking to Valerie he had changed his mind. We were told we could not use the new instruction. I was also told that I could not take Carole home. Valerie and her care worker had decided I was unsuitable to look after her. I was put onto supervised visits and told what I was allowed to talk to Carole about. I was told if Itried to speak to her about her welfare or finances, my visits would be stopped altogether. Again my hands were tied.

Carole's mental health began to suffer again and she was put on to her 'as required' or 'prn' medication. Two of the medications prescribed were, Haloperidol and Chlorpromazine. At the next meeting I told everyone about the side effects that Carole had suffered on these tablets before and reminded the doctor that our mother had been fighting to get these as required drugs removed from her prescrition, for the same reasons. The doctor then said he had to listen to Valerie as she held power of attorney. Valerie told him to go ahead. After a few weeks Carole began to display the side effects I had predicted and she was taken off of them. I though at this point the doctor may start listening to me but he refused to even talk to me any further saying 'why should I help a thief'. I pointed out that by this time the office of the public guardian had investigated the alleged thefts twice and found there had never been any. In fact they said that there had been excellent record keeping. He just shrugged and said he was not going to help. From then on things only got progressively worse. 

The doctor continued to add to her medication. I reminded him of her chronic liver and kidney disease and asked if he really thought it was a good idea to keep giving her drugs she did not need? I said that what Carole needed was stimulation. I again offered to take her home saying that I would take her to the clubs she loved and this would be good for her. I was refused again. I learned from the mental welfare commission that as she was a voluntary patient I could take her out if, she wanted to come with me. I went to the hospital and asked her if she wanted to come home with me, she said she did. Three of the nursing staff then stood up and said that, Carole's doctor had told them if I tried to take Carole out they were to use the power of the mental health act to hold her. Again there was nothing I could do. 

I had to watch while my sister became so doped up that she could no longer eat, drink, walk or go to the toilet unaided. She could barely even talk. For over a year I had been saying that they were killing Carole, I kept getting told she was 'fine'. When she was eventually seen by a medical doctor, he said that he could not get an anethsetist to look at her while she had so much drugs in her system. He took her off most of them and noticed, 'no significant change in her mood', in fact he said that was the best he had seen her. She was now able to have a laugh and joke with the nurses and she was drinking without the need of help. Sadly Carole got to see him too late and the damage had gone too far. Carole's death was pancytopenia or bone marrow failure. Cause? Most likely due to her antipsychotic medication. 

After Carole died, the doctor would not even allow me to get any clothes from the hospital to bury my sister in. I had to prove I was her next of kin first. This kind of treatment has to stop. Please sign the petition and share this story so that no one else dies. If you are on facebook you can sign the petition here. Call for a change in the Mental Health Laws

Not on facebook, you can sign it here.Stop Over Medicating Mental Health Patients 

Thank you to all who do.

Friday, 11 October 2013

Ignorance. The enemy of mental illness.

My sister Carole 9 months before her death.

Carole was one of the nicest people you could ever wish to meet. The kind of person who would do anything to help even if she didn't know you. It annoyed me when we were out, you'd see people pulling their children closer to them and warning them not to go near her. Does she look scary to you? Or we would be in a shop and the assistant would say does she want anything. Why not just ask her?

Ignorance is probably the worst enemy of mental illness. People tend to be afraid of things they don't understand. We have all seen the movies and read the headlines in the papers about the crazed madman/woman on anti psychotics going on killing sprees. So, can we really blame them for thinking the way they do? Or at the other end of the scale, you get the ones who believe that because someone has a mental health problem they must be stupid too. Most people tend to believe what they are told and everything that they see. When I was growing up, the local mental health hospital was known as, 'the loony bin', it kept that label until it closed a just a few years ago. Now we have a mental health unit in the grounds of our hospital and I often hear people refer to it as 'the nut house'. Unless we educate people these attitudes will never change but, that won't be nearly as easy as it sounds.

I don't believe that many adults would be willing to learn about something they were too ignorant to believe could ever affect them. So educating the children seems to be the logical place to start. Schools already have people going in to give talks on varying subjects, so why not mental health? It would serve two purposes.

  1. They would learn that most mental health patients are more likely to hurt themselves than someone else. It could also teach them to recognise certain symptoms of mental illness. They may have been having problems themselves or are now able to see that someone else is. That understanding and knowledge could then lead to the person getting the help they need to lead better lives.
  2. Control the stigma. I say control because, I don't think it is something that will ever go away completely. You will always get people whose attitudes will never change, but, the more people who know and understand mental illness, the less the stigma will be and who knows, hopefully I could be proved wrong.
we can make a start now by educating our own children. I am, by no stretch of the imagination an expert on mental illness but, I have been around people who suffer from it all my life. I have learned a lot from that and have met some wonderful people who I am proud to call my friends. 

Thanks for reading this and before you go, have you signed my petition for a call to cahnge the mental health laws? If not you can do so here. Thank you. Call for a change in the mental health laws

Wednesday, 9 October 2013

Was my sister Bipolar?

After reading a piece by Sinead O'Connor, about her diagnosis of bipolar, it again started me thinking about my sisters diagnosis. Often over the years that my sister Carole was being treated for bipolar, I wondered, would things have been different if Carole had not been kidnapped and raped? Would she still have got mentally unwell?

Carole was kidnapped and repeatedly raped by three men when she was just ten years old. When we got her back home she began to act, what I would have said at the time was 'funny'. She would speak to people who weren't there, rock back and forth, keep clenching her fists and sometimes she would just keep laughing. When we asked her what she was laughing at she said she didn't know, she just couldn't help it. Her doctor diagnosed a nervous breakdown. She was then put into a secure hospital where she was the only child on her ward. She was medicated but, as I was only eight then I do not know what she was put on. What I do know is that I and our other sister got so upset by some of the visits that our parents stopped taking us to see her. She was locked in there for years until a new doctor suggested, priadel and methylene blue. After a few weeks of treatment Carole improved dramatically. Soon she was back at home with us. She stayed mentally well for years with only a few ups and downs that we handled at home. Then we were told that methylene blue was no longer to be used in the treatment of mental illness so they would need to change her medication. When Carole came off of that her old symptoms returned. It took a while to find something else that suited her. The next thing that happened was, we were told that the priadel had caused liver and kidney damage so she would need to be taken off that too. Again her symptoms returned and again it took a while to find a new drug that suited.

None of the new drugs ever worked as well as the first two had so, when in 2010 Carole was admitted to the Carsview Unit and her doctor asked me what had worked best for her in the past, I told him. He said that he could not put her back on priadel as it could prove fatal to her but, he did get the necessary permission to put her back on methylene blue. I suggested that he check her records for what else had been prescribed in place of the lithium. He did this and after only a few weeks we were told that Carole could leave the hospital. Sadly due to legal matters that are now under full investigation I was not allowed to take her home. Due to this Carole was then put onto various different 'as required' medications. I warned them how she would react on them but I was constantly ignored. The medication kept being increased despite my reminding them about her chronic liver and kidney disease and sadly aged 51 she passed away having never left the hospital again.

At the time this happened to Carole attitudes were different. People trusted doctors. They were in the caring profession. They knew best. Or so it was believed. Now that I know more, I question whether my sister was bipolar or not. Yes she displayed bipolar symptoms but, she had just gone through what would be a traumatic experience for anyone let alone a 10 year old girl. Carole was never offered counselling, in fact she was never offered any kind of alternative therapy, I don't think it existed back then, but what if she had been? Now most people know that trauma can lead to mental health problems we also know that drugs are not always the answer. I believe that if alternative therapies had been offered to Carole there may have been a different outcome. I now believe that many of Carole's symptoms were in fact side effects of some of the medication she was on. This in turn led to her being treated for other illnesses that she never had.

Carole had ups and downs all of her life, most were when her medication was interfered with. When she was at home, we never gave her the as required medication we let her work through her ups and downs and with our help, she always bounced back. This worked for her, we knew what she liked and we coxed her into getting involved and soon she was well enough to be getting on with her life again. Stimulation seemed to work. We told everyone this but no one ever listened. When on the odd occasion she did get to go anywhere it was to art classes or the gym. She detested both of these and would flatly refuse to go.

I believe that, Carole died after being over medicated while, being treated for illnesses that she did not have. Her life was taken from her. I also believe that some doctors are too quick to diagnose and medicate mental health problems. I have highs and lows in my life. I got really upset when our parents died, naturally so did Carole. No one drugged me up but they did Carole. Why?

This kind of treatment must stop. Just because someone suffers from a mental illness doesn't mean that they should be, medicated to the point of being unable to function, any time something bad or sad happens in their lives. They like anyone, just need time to deal with it.

We all know the benefits of medication, when we need it. We also know that having to take medication long term will eventually start to take it's toll physically. For this reason I believe that medication should always be kept to a minimum. Another problem was physical care. Staff need to be more aware of the patients physical condition. Carole's death was preventable. Her condition could have been treated if diagnosed sooner. I begged for a medical doctor to be called for over a year. No one would listen. They all said she was fine. Do you also believe this needs to stop. Then join my campaign. Sign the petition.

On Facebook?You can sign it here. Stop Over Medicating Mental Health Patients.
Alternatively, you can sign it here. Stop Over Medicating Mental Health Patients Please note that the full petition is currently still being drawn up but will be available soon.

Friday, 4 October 2013

Stimulation not medication!

Why do some doctors believe that a little pill can cure everything? Everyone gets down from time to time, I know I do but no one would see the need to medicate me for it. Why then would they do it to someone suffering from a mental illness?

I have been around people who suffer from mental illness all my life and I have lost count of the amount of times I have seen them admitted to hospital for treatment that they do need. I have personally seen massive improvements in peoples mental health by, simply being there to listen, counselling, music or art therapy and so much more. Stimulating the brain can do wonders.

I am not saying that this would work for everyone but, before simply putting people on medication wouldn't it be better to see if they responded to other forms of treatment first. It would certainly be a lot safer than putting people on drugs that can potentially harm them physically.

Doctors are not always right. They do not know how you feel. You do. Everyone knows that medication is supposed to make you feel better, not worse. We also know that some medication will have side effects, but, you should never have to substitute one bad feeling for another.

Below is a list of side effects that may show that you have been over medicated. Please also understand that some of these can be symptoms of mental illness but, if you did not have any of the symptoms listed below before you started taking your medication. Check it out. Speak to your doctor, get a second opinion if necessary. This is your life. Take control. Be heard. Be safe.
  1. General weakness and fatigue.
  2. Stomach pain.
  3. Coordination and motor problems.
  4. Falling frequently.
  5. Sudden weight loss or weight gain.
  6. Frequent rashes and skin flushes.
  7. Concentration and memory problems.
  8. Confusion.
  9. Slower thought process.
  10. Irrational thoughts or difficulty with reasoning.
  11. Visual and auditory hallucinations, delusions, psychosis.
If you believe that over medication, wrongful incarceration and being denied the right to make your own decisions is wrong. Sign this petition now.