Archive

Monthly Archives: December 2013

Introduction:

I was sorry to hear my guest blogger is back in hospital again.  Here is an example of where care is failing when “treatment of enforced drugging” does not work.   I believe a much different approach needs to be taken especially for those who are “treatment resistant” to the drugs or may dislike taking them due to terrible side effects.    How can this be achieved unless there are specialist facilities provided here in the UK  and I do not mean a hospital – a prison like environment.  I mean somewhere far more therapeutic like Chy Sawel where patients would be treated humanely and proper assessments given.   If there are centres provided that involve professionals in quiet and peaceful locations in the right environment I do not see any problem. I just do not believe anyone should just be written off and that nothing is done about a situation where care simply does not work.   The drugs do not cure someone and can in fact make someone worse that is for sure and what if someone is misdiagnosed or are suffering from serious physical health problems – nothing should be ignored.   All the more reason to have some specialist facilities set up with the Country’s leading experts being involved who know everything about the drugs,nutrition, intolerance/food allergies etc as well as those involved in intensive trauma therapy/PTSD.  If someone is not getting any better they could have the wrong diagnosis and this needs to be clarified by leading experts in the field of say autism and PTSD and then instead of just writing someone off, a new plan of treatment is agreed upon.

I will soon be including some of the writing of my guest blogger who has written a whole piece on “New Psychiatry” and I believe he has made some very valid points which I will be featuring shortly.

 

 

 

 I will add to this blog as I am impressed with the brilliant writing skills of this individual and feel what a waste when someone like this could have so much to offer – there are many others like my guest blogger who are forced to take drugs – something could have  happened to that person – maybe they have been misdiagnosed or have not been properly assessed.

Xmas this year has been good.  My daughter Elizabeth has been allowed to come and stay and has just left to be with the rest of the family.  .

Elizabeth asked me to pass on her thanks for everyone’s kind support –  lots of people, complete strangers from all over the world have offered to help and have sent personal emails.  Elizabeth likes music and I showed her some of the musicians following her but   I do not show Elizabeth my outspoken comments on  my views regarding the drugs and her treatment.  Elizabeth wants everyone to know she had a great time at home this Xmas.

We had guests over in the evening that my younger daughter knew from Italy who were away from their families at Xmas.   I did some food as I had quite an abundance of food in for Xmas.  Unfortunately the next day Elizabeth was ill not surprisingly having probably eaten far too much.  I have noticed every time Elizabeth eats she feels ill and this reminds me of when she was on Aripraprazole. I thought she had developed Bulimia on this chemical.   The hospital had given her a gift voucher and I got her mainly clothes and money but Elizabeth will be too ill to trapse around the shops in London – she would not like this at all so I have warned the rest of the family not to take her shopping in the sales.

Elizabeth wishes to share some good news with everyone.  She wishes to tell you she is being discharged from hospital soon but she needs to look at some places first and has only been to see one (I cannot mention where) and she liked it.  Elizabeth asked to come home and live at home but this will never be allowed as the team do not trust me and think wrongly that I would take her off the drugs or persuade her to stop taking them.  The leading professor tells me it takes 4 years to come off these drugs in her case.  I am not a doctor and unfortunately do not have the knowledge to reduce someone off drugs for a start and even without the fantastic advice I have been given this kind of thing should be done in a proper environment but my criticism is where is there a proper environment if treatment goes wrong or if diagnosis is in doubt.  Elizabeth has still not been shown the report by an independent doctor by anyone.   I think this is bad.  She has also not been told by anyone in the team about possible discharge.  I have told my daughter this good news and it is good job I know about it as to keep important matters like this from a patient is not right and extremely unfair.    It is not honest to do this.  If any mistake has been made in diagnosis then it should be rectified and an apology given and fresh look at treatment but no one will ever own up to this.  Things can easily be covered up when matters are kept secret like an independent report from the patient and I have been extremely honest with my daughter and this is why I do not like the current system of care.  I do not agree with such secrecy.  This is why things need to be changed and patients who has been misinformed be properly advised and notified and the sooner things are changed then the better.  That way the correct treatment can be given rather than plod and take the easy route.  I am not the kind of person to take the easy route as nothing positive can ever be achieved and I do not mind the world knowing who I am either as I am not ashamed and do not believe in stigma.   Elizabeth said she often feels ill on this medication after eating and suffers headaches.  Unfortunately Elizabeth remembers past friends likes yesterday and I hope that once out of the restrictive environment of the hospital she will move on in her life and make the right kind of friends and be happy.  Only with the right friends will she be able to move on and forget her past and of course the recommended intensive trauma therapy.   By the way I do not agree with ECT as I am touch with patients who are most upset they have lost precious happy memories as a result and it is horrific if this kind of treatment is forced upon any patient.  This treatment should not be forced upon anyone and if this is done then it is abuse in my opinion.

It is recommended Elizabeth has intensive trauma therapy and this should have been given in the very first instance. Anyone who has suffered abuse should be offered this treatment in my opinion before being put on the mind altering chemicals that do not work for everyone and being given a label that may well be wrong.

Anyway it will be a quiet day today and I intend to visit the old lady I have known for a long time.  I have a lot of clearing up to do in the house. 

Tomorrow, Elizabeth will be taken back to Wales.   I have kept a couple of days back for when we may have to go down for any meetings.

In all it has been a very successful Xmas and I have felt so happy.  The best part was us all sitting round the table having dinner together on Xmas Day.

I am full of hope for the future and things are looking positive and my main wish would be to see positive change: openness and honesty surrounding mental health care and involvement of families by way of open dialogue as families are excluded in many cases and everything is so unfair –   a patient should be treated openly and honestly and this is not happening under the current system as I have documented.

There are many patients who are highly intelligent and could offer so much to others.  One such person I will be featuring in my guest blog which I will do at the weekend.  This person has written a fabulous piece called “New Psychiatry” and I think that this should go right to the top in  my opinion –  these valid points should be discussed at Government level.    It is far too long to feature in my guest blog so I have sent a draft of what I wish to publish for the approval of this person who is currently a patient in hospital and knows exactly what he is writing and has had extensive experience of the system .  All I am doing as a mother is listening and in fact I agree with much that he has written.  Many professionals could learn a lot by listening to this person who wishes to be heard by the world and wishes to talk openly and honestly about his observations and views and I admire such honestly and am proud to soon be featuring this excellent piece of writing.  This person should be given a positive role to represent the patients in much needed improvements in respect of mental health care in my opinion. 

 

 

I have left Xmas this year to the last minute as I have been busy with decorating and am just about getting up straight. Elizabeth is allowed to come home this year unlike last when she was escorted by 2 nurses and was only at home for a few hours before being taken back. Her sister is picking her up halfway where staff will be meeting with her as I am not able to do this so I am very grateful about this. Elizabeth has texted me to ask me to buy something in the way of food she likes. Today I have been shopping and tidying up the house as well. I am exhausted. I have no holiday over Xmas and so have been rushing to get things done at the last minute. During the week I went to a fabulous party with my colleagues in Chelsea. It was sheer luxury to stay for 1 night at the Novotel in Hammersmith. Well I would recommend this as whilst the room was not the best I have stayed in and did not compare to the fabulous accommodation in Madeira or the view come to that the breakfast was every bit as good and I do not have time to have a breakfast in the morning as I have to be up so early to travel in to Central London. Anyway Elizabeth will be staying Xmas Eve and Xmas Day with me and then going to stay with her Grandparents and rest of family and they will take her back. I have a couple of days carried over in holiday for January – there may be meetings coming up that I may have to attend so I would rather carry over these days as I may need time off. I am so looking forward to being like a family again just for 1 day. I am positive that the New Year will bring something good and I hope to catch up with Mr Burstow and Mr Lamb to discuss what they intend to do about things bearing in mind my extensive discussions. I hope to go to a conference in June and I have fabulous news – I am going to keep that a secret for now – I have more than one piece of news that has made me so very happy. Over Xmas I hope to visit the old lady who has become part of the family but unfortunately I am unable to do what I was once doing as I now work full time. We used to have her over every year to us at Xmas along with my father until both became too severely disabled. I think Xmas is a sad time for many and a time when the elderly and mentally ill should be thought of. I hope that by writing my blog it makes other mothers think – well here’s a mother who is not ashamed – here is a mother who is proud and not afraid to speak out – I have read many books and educated myself but to begin with I did not understand to be honest. However I have seen more than 1 case in my family and I would advise any mother not to turn their backs on their sons/daughters. I would advise any mother not to be ashamed of speaking about the subject of mental health care and I believe this is the way forward for change and I am positive that Mr Lamb has something planned for change otherwise I would not have been invited and I want to hear all about this from him and Mr Burstow. A specialist centre is needed to do proper assessments that are not currently being done – the way to get rid of stigma altogether is to get rid of the secrecy surrounding the courts and include the wider public – involve them in cases like my daughter, bring things out in the open to show the public that people under the mental health are not all killers and also honesty surrounding the drugs would be a good thing – some people may not be able to metabolize the drugs. Some drugs may work for some but may cause adverse reaction to others leading to psychosis. This is hidden from the public instead of researching how to help these people they are written off as treatment resistant. Well here is what I think of this diagnosis THIS IS A LOAD OF RUBBISH! Given proper decent humane care an intensive trauma therapy instead of drug after drug is the way forward but I have been advise by leading professors that it can take years and years to come off the drugs properly however what should be provided is the correct facilities – ANYONE can suffer psychosis on these drugs or coming off them if things are not done properly and I only want a Bio Medical Scientist involved in any changes or someone like the professors who speak the truth. I also want Dr Walsh involved to look at the correct treatment and assessment and to train up the 20 doctors so if there are any doctors interested please contact Sandra Breakspeare as another leading Professor wishes to be involved in the Chy Sawel Project and I am delighted. There is hope for Elizabeth now and on this happy note I am going to wish everyone a very Happy Xmas and New Year and I cannot wait until the New Year as I am excited to see all these new developments in place.

I briefly read the blog by Mental Health Cop. I enjoy reading this blog and am pleased that recognition is being given. On the one hand it is good that someone in the Police is taking such an interest however I do not happen to agree with everything on his blog.

For one I disagree about the week long training course. I thought the police training on MH was excellent in my opinion however the best training would be for him to come and meet the patients and listen to what they have to say and maybe the police can be involved in a better way rather than just arresting. I cannot blame the patients for reacting the way they do having seen what I have seen.

It is nothing to be proud about being invited to speak in front of all these professionals. He would have more to be proud about if he was to come and meet the patients themselves who have suffered cruelty on the wards.

Well I too have had an invitation this year to see Mr Burstow for which I was very grateful. I was pleased he was meeting with Mr Lamb directly afterwards.

As regards being invited to speak in front of professionals. I have invited myself to do this! Twice I got up to speak at the IOP and backed Frank Bruno as I admired this honesty. I also spoke at Carers UK Conference.

I also admire Eleanor Longden – this is the kind of person the professionals could really learn from especially the Police/social services and psychiatrists.

I would be more impressed if I was to read on Mental Health Cop that he was meeting with the patients or that the police were doing something positive for the patients – for instance there is nothing to do at the weekends on the shocking wards. Instead of just going around and arresting the patients the police should have a better role in my opinion. My younger daughter whilst at school and when diagnosed with Schizophrenia was taken out with the police for 1 week during school holidays during the time I had to work. She had a brilliant time. Something positive like this would be good for the police to be involved in.

I am not impressed with reading about “places of safety”. I am sorry but where are these places of safety? A cell is more quiet and I heard not only my daughter but other patients begging to go to prison.

So here is my wish list for Xmas and very different from that of mental health cop:

An end to the cruelty of enforced drugging and CTOs and proper look at assessments and checking to see if someone is metabolizing the drugs. If not then the drugs could be harmful to that person and it is not only a waste of money but could result in severe physical health problems if continued.

It is about time the outdated law is changed and consultation for this change should be done with patients and not just the professionals . It is the patients that are suffering the abuse. Mental Health Cop talks about assaults on staff – well I am not in favour of staff being assaulted but this post is one sided as I have heard about the abuse to patients and what is done about this. ABSOLUTELY NOTHING – if mind altering drugs are given and tampered with like they were at the Bethlem then this leads to psychosis and who h as caused the psychosis in the first place – this is none other than the professionals themselves. You cannot mix drugs or do a steep reduction without causing adverse behaviour and I feel like this was done deliberately. The care is abusive – the law encourages abuse and if there were proper facilities available then no patient would have to go on a CTO. Also if the drugs are found to be doing more harm than good a patient is just ignored – this is when there should be a proper facility for a patient to go in and be safely reduced. A reduction of these chemicals is surely no different than a reduction from illicit drugs yet no help is given to patients to come off the mind altering chemicals in a proper way if someone complains of serious side effects. A patient is wrongly told they have to take them for the rest of their lives and whilst I am not saying to anyone to go ahead and stop these drugs, I think there should be the facilities given and professionals involved in helping in some circumstances and if a patient wishes for this to be done. I am not saying that the drugs do not help everyone but there are circumstances where they are dong more harm than good. By the way reductions are not done properly in the UK and that is why there are failures – too steep a reduction can cause psychosis and there have been suicide cases. So proper regulation needs to be put in place where bio medical scientists are closely involved who really know the workings of the drugs and how best to do any reduction – if a patient suffers from diabetes I heard they get taken off the drugs but there are others who complain of serious side effects but are totally ignored. Nothing is being done properly in the UK. Patients are kept on the drugs simply to control them and if the patients are drugged up then the staff can have a quieter time. I would not advise anyone to stop taking their drugs and whilst I may be anti-drugs I believe that unless you have the support of a professional it is not a good thing to stop taking them but my criticism is there is no choice and I do not know how staff can surround a patient, pin them down and inject them with drugs yet MH cop goes on about assaults on staff and not on assaults regarding patients.

I would like more Government funding into MH care and improvements on wards. I would also like to see at the same time much more support/investment to those in the community.

I would like to see inclusion rather than exclusion and openness and honesty instead of secrecy and cover-ups/bullying and harassment.

I would like to be able to choose the psychiatrist as the nearest relative with the consultation of my daughter of course – I thought Nick Clegg was going to do something about this. What has been done? I shall be writing directly to Mr Clegg about this he said changes would be made in 2014 . I wish there was also choice of country in order to get decent care – I would of course choose Finland – Tornio – the only place in the world they have decent care and treatment by the very psychiatrists I would like for my daughter. No wonder they have 95% success rate.

I would like accountability and openness in the family courts which are currently secret. I totally disagree with this and would like this case to be open as much can be learned by what is going on. This is the only way to improve things and much money could be saved.

I would like to see Chy Sawel set up and have Dr Walsh come over here to assess my daughter so she can have the correct treatment. A place for my daughter to go unlike a shocking acute ward that is overflowing – a peaceful environment away from a noisy bustling city. An ideal location would be a farm with lots of animals – Elizabeth likes animals. There is nothing therapeutic in an acute ward that is for sure.

I would like open dialogue introduced so that parents and families are included unlike at present. Not all families are abusing their sons/daughters.

I would like to eventually see Elizabeth living a normal life and having a job even if it is just a few hours a day.

Most of all I would like to see Elizabeth happy as is my younger daughter who was diagnosed with Schizophrenia as a child but is now on top of the world.

If I was to win the lottery I would use everything to set up Chy Sawel and Root and Branch Project and I would wish for Dr Walsh to come over and train up the 20 doctors.

I would like to see more patients included and given the opportunity with the right level of support to be able to take on a small job. It is disgusting that there is such a waste of talent out there as many of the patients are highly intelligent or else have brilliant artistic skills and much to offer yet these people are kept down by so called professionals.

Well that is enough of my list. It is not long now until Xmas – I shall hopefully see Elizabeth over Xmas and I have some good news – however it is only fair Elizabeth tells you this herself if she feels up to writing.

I shall be enquiring how my guest blogger is doing with his piece. This guest blogger has excellent writing skills and I am sure the piece will be extremely interesting.

Just like mental health cop I shall be speaking in front of people but as a “surprise” guest. I have thoroughly enjoyed going to events at the IOP. I have something very interesting to discuss with them but I cannot disclose this as yet.

This weekend I shall be busy – going to meet friends tomorrow seeing a show and having a meal out. A party mid-week and I must find out when the Carers UK party is as I miss out on many nice things organised by the carers group because they are during the day. I shall only see Elizabeth on Xmas Day and she will be spending most time with the rest of the family .

Elizabeth made it quite clear today that she does not want to go to a step down house………………. if that is the plan to keep hold of her by this hospital.  Someone said they had their own step down houses well maybe this is why nothing is moving on. There are meant to be other referrals but there seems to be some big holdup right now and having spoken to my daughter I am wondering if this could be the reason.  If someone got on the phone and communicated with the family then there would be none of this speculation going on.  “I just want to get on with my life now”  –    Anyway I want the world to know my daughter’s wishes – she has recently been taken to somewhere and liked that place very much.  Elizabeth’s wishes should be listened to.

I got a call from the consultant psychiatrist recently – the first call I have ever had asking what my requirements would be for Xmas but there was no mention on how long Elizabeth would be allowed to spend with her family.  So far only 1 night has ever been allowed and I have had to share my time with Elizabeth and the rest of the family who are living in two different locations.  Elizabeth lives about  the farthest away as compared to anyone else so she tells me herself.   I am waiting to hear whether the rest of the family can pick her up – that is the problem – I do not have holiday left over the Xmas period apart from the statutory days.  Virtually all my holiday has been used going to Wales.    If I did not have a car I would not be able to see Elizabeth.  If I did not have a job I would have no money to visit.   Getting back to my car I am obviously concerned that the car is looked after well what with all the driving I am doing.  Today I have managed to find a good garage for my car who are honest.  I am delighted with this as one previous garage had not returned my last car and I doubt I will see a penny of that money I spent on it ever again.  The people repairing my car were “friends” and had done work on my car before without any problem yet suddenly they ignored calls and made excuses for not giving the car back.  The Police will do nothing as this is a civil matter – they are just  not interested at all.  Being without a car for so long left me in despair.  When I had to visit Elizabeth in Kent it was really awkward and I had to rely on buses, tubes and trains and nearly all my time was taken with travelling but I made the effort even when I was banned from the ward apart from visiting for only 1 hour.  Because of sorting out my car today I was unable to go to  my group meeting with the former patients but may invite some of them over soon. 

The most I could hope to see of Elizabeth if I am lucky is just 1 day.   I just hope that will be possible.

Last night I went out with my former work colleagues to a very nice pub for a Xmas meal.  I have another Xmas do to go to soon as well which I am looking forward to.

I have managed to get over to my gym several times this week even though I have not felt like going.  The classes are very good at my gym but now that I am not training for the bleep test I do not do very much in the gym itself.  I was also using my gym for  training earlier this year for the Marie Curie Swimathon and completed 2.5km – I used to do competitive swimming so this was not a great achievement on my part as in one training session we had to do so much more but that was years ago now.  Elizabeth and her sister took part in swimming lessons but they were not interested in joining a club which was my main interest when I was younger.

I have told my two daughters that this year I want nothing for Xmas –  I believe Xmas is too commercialised and I would like to see them donate the money instead to something like Chy Sawel.  I used to take Elizabeth and her sister to church in the morning on Xmas Day and they both went to Sunday School.   Xmas to me would be for everyone to be together and that is all I could wish for.  I also usually visit an old lady on Xmas Day and take her dinner –  we used to have her over and with my father who had Alzheimers but in the end it became impossible as they both became so disabled to the point they could not walk.

I cannot say I am looking forward to Xmas this year and certainly will not look forward to Xmas if Elizabeth is not allowed to come over.

 

 

     

 

 

 

 

 

%d bloggers like this: