Last week Elizabeth was away with the rest of the family by the coast which was nice for her whilst I, on the other hand was faced with travelling on crowded stifling hot trains and buses, due to tube strike action. It should have been a peaceful week but it was not but never mind I am not going to let a strike prevent me from getting to places. Not having Elizabeth last week was a bit of a break for me. I have to remind, encourage her and prompt her to do things. Elizabeth gets very tired on the drug Clozapine which affects her motivation and at times thinking ability. Sometimes Elizabeth will think of things herself, there are good days and bad; it is not surprising as she has been in hospital institutions and care for c 3 years. I and I am lucky to have her out from the care system as once in it, a patient can easily become trapped and under never ending control and restrictions and this is especially easy for the team to do when sent a long distance from home. When someone is drugged up enormously, this obviously affects their ability to speak up and request things and weakens them to the point they cannot face going through meetings or tribunals. Solicitors do not act fairly if a patient is unable to contact them and deal with them effectively from what I have seen. Patients can remain stuck in hospital or care institutions for many years/ a life sentence in some cases. This affects their relatives/parents who become distressed at seeing their sons/daughters left under un-therapeutic establishments that enforce unnecessarily in some cases such rigid control – all this allowed to go on in a system that disregards human rights and this is not being publicised in the press. Luckily when I was regarded as Nearest Relative I had plenty of energy to challenge what I see is very wrong and was able overturn the section 3 which was entirely unnecessary and this can now be seen as evidence to anyone who has seen/met Elizabeth since she decided to come home from the care home and this has been over a year now and now I would like to see other similar cases reviewed as I have met some very decent parents also affected. I realise it will take a long while for Elizabeth to become fully independent as I would like to see but I do not see that this is impossible and neither is it impossible for others given the right kind of support to their families. Elizabeth has lost confidence and fears going out alone but whilst she is no longer a prisoner to the system she is a prisoner of her mind as she was in a locked rehab institution sent miles away to Wales. There should be more therapy available to such cases. So in order to rectify the situation, I try to take her out as much as possible at the weekends and take her to my various groups and conferences run by ISPS which is a good way of encouraging Elizabeth to participate in workshops etc and speak up and join in discussions and mix in with very good and decent professionals/service users who are getting on well in their lives. A good example of this is Rai Waddingham who is not on mind altering chemicals and has succeeded in freeing herself from this kind of “treatment”. Of course going out at weekends means that it is not easy to get on with day to day chores at home but we somehow manage to get by and we have managed over the past year without any support whatsoever. It was a year ago now when we were taken to court by professionals whose aim was to return Elizabeth to the care home hundreds of miles away from home, restrict visiting rights and put her on a CTO. It was even being discussed in the files of placing her in hospital where security was tight – more like a secure prison, which would have destroyed Elizabeth. I know of people being placed in such establishments because they are vulnerable, not a risk to society and for convenience as they cannot manage in the community. The team’s main concern was compliance with the drug Clozapine from what I can see in the files and despite her request, no one in the team will consider reducing this chemical. We do not even know the name of the consultant psychiatrist and the problem is that Elizabeth and my carers do not wish to see social services first and not once has the new consultant psychiatrist contacted us. How can you trust such professionals who have spent a fortune on court instead of listening to Elizabeth’s wishes and also written some very nasty things in the files. They see that this “wonder” drug should be taken for the rest of her life regardless of any physical health problems and I suppose this is why professionals like to keep someone locked away as if anything is wrong things can easily be covered up. This drug is far from a “wonder drug” – I can easily confirm this fact. I wish to add to my previous blog about this when Elizabeth was at the Bethlem as there is something very interesting I wish to include but I need to look for this when I have time. Anyway, parents and relatives are pushed aside and access to the patient can become impossible because of rigid security controls and a way of doing this is to ban you from visiting and take phones away. Another way is by way of coercion to try and turn the patient against you. When I look back on the contents of the files and previous court papers I see that the team do not consider me to be a fit mother because I have strong views against these drugs and they think that I am a risk to her in that I will just stop her on these drugs but it was the team who did this – they were the ones who made it impossible to get the drug Clozapine which was deprived locally in a bid to force return her back to the care home. I have already documented all of this but a good way of ensuring that team members listen and force them to provide the chemical in order to avoid serious withdrawal effects and injury is to take individual court action against certain members of the team and then they will listen to you. Non medical members of staff would not be understand how the drugs work or would think about what harm the drugs are doing to Elizabeth and they would therefore not understand the risks but I as a mother know full well that you cannot just come off these awful drugs as much as I would like this to be possible. There is no help or support or facility when it comes to prescribed drugs and especially when you have been given a label and such a label, right of wrong, means drugs and it is convenient for a team to disregard other health issues and prescribe them for life when in actual fact someone could be completely misdiagnosed. So risk to self and others does not take into account the risk to the patient and I therefore do not agree with the current system that allows this fact to be ignored. A hospital/care environment does not suit everyone and neither does being labelled or taking the drugs and, far from making someone independent, it can have the opposite effect. In some cases a patient can go downhill and just give up. When Elizabeth was labelled (and she has plenty of different labels) this is what happened – the labelling is only to ensure benefit entitlement/access to the drug treatment that go with those labels. However one of the labels is PTSD and I have looked this up to find Clozapine is not recommended for this condition. Elizabeth’s lack of thinking ability is seen to be a symptom of illness rather than the effects of these extremely powerful drugs that make control of patients easy to a team of professionals. The more drugs the better as I see from the files to my horror maximum amounts concomitantly prescribed were given to Elizabeth when admitted to hospital – these are supposed to be caring professionals but I can prove otherwise by the contents of the files. Anyway, as Elizabeth has more than one diagnosis I have asked for assessments to be carried out by experts in the field of PTSD and Aspergers which are also diagnoses mentioned in the files which the team conveniently refuse to acknowledge yet they were given by other experienced professionals. One assessment was given by an expert of their choice – a Neurologist based at Queen Square who saw Elizabeth for just a short visit yet comes to an agreement with the team on one diagnosis but how on earth can you count this as a valid assessment when this same professional who I am finding it very difficult not to name suggests optimising the drugs and Elizabeth was already on a high dosage. How can you respect such an assessment and I believe every single diagnosis needs to be thoroughly assessed which I have requested from the GP. If an assessment costs a mere £600 for instance as I told the GP, it should be borne in mind that £60000 a year is being saved by not providing anything in the way of care to Elizabeth. These assessments are a small price to pay in my opinion and Elizabeth has the right to have them as it is like a lifetime of imprisonment of taking drugs that are ineffective when someone is treatment resistant or where diagnosis is in question. I cannot accept any labels without scientific proof and need to see such proof of the diagnosis to ensure that the treatment is in accordance with the BNF and NICE Guidelines.
Anyway, this weekend I took Elizabeth to the Chilfest and we saw a variety of very good acts including Shakatak, Odessey, Jocelyn Brown and Shalamar. I took with me a close school friend and Elizabeth’s sister joined us later. This was held in Tring and it was fabulous weather for this event. Really enjoyed it.
Saturday, I was a bit concerned how I would encourage Elizabeth to get up in the morning after a late night as I had booked for the ISPS
Conference called Walking Alongside. After taking this powerful drug Clozapine Elizabeth has to lie down. It causes dizziness, double vision, anxiety – this is the effect of Clozapine and also she is very tired on this drug and it has caused huge weight gain As always this was a very good event hosted by Rai Waddingham who is an example of someone completely off the drugs who now feels fit and well and I see her as an inspiration for Elizabeth and others. Anyway there were various speakers, service users, carers and professionals taking part. We were put into groups and later changed around slightly so we could take part in discussions with others I the room. There was a very good attendance and quite a few consultant psychiatrists and other professionals. On my table we had two consultant psychiatrists who had travelled from a very long distance away and I was very pleased to see that there were such professionals who cared about seeing changes to the current system and looked far beyond just check lists for instance. Whilst we have had the very worst experience there were many interesting points of view to consider and looking beyond is not just a case of the labels given to patients or your perception of how someone should be but noting that is different. It is easy to think all professionals are bad when you have had a bad experience yourself but, talking to those who attended this event made me realise that it would be possible to walk alongside – at least in some cases. However I am afraid that this would only apply to the professionals who I met at this conference and spoke to as it is all about trust, openness, honesty and sharing whichs is why I am in favour of open diaglogue.
In order to walk alongside, you need to be able to trust professionals but I would need something in writing from the professionals in my local area worded to the effect that they would stop taking me to court time after time again before I could trust them especially having read the files. If the court case had succeeded, I would have lost my daughter to the system and my family would have been destroyed. I am glad Elizabeth told me what she did and I put two and two together to realise what was being done behind our backs. In contrast, I had faith in those professionals I met at the ISPS conference who spoke in a very honest way and I was impressed to hear that they looked far beyond just medicating patients and my view of consultant psychiatrists in the main is that these are doctors who drug patients on enormous dosage of mind altering chemicals and that is their main form of treatment and so it was good for me to meet and Elizabeth to meet some professionals who had much greater insight and I would not have had trouble in “walking alongside” them. I think the answer is definitely such courses provided by ISPS where professionals, service users and carers come together and listen to one another and at this event I did not experience the feeling of “them and us” which made a pleasant change.
It is good for Elizabeth to attend such an event and to be encouraged to take part in discussions and activities with professionals and those who value the experience of someone with lived in experience and how they feel and good to see professionals who are willing to listen as this is a major problem with many of them.
Below are the details of this event we attended.
Navigating the tensions and opportunities for collaboration between lived and professional experience of psychosis
Saturday, July 11th 2015 @ Amnesty International, 17-25 New Inn Yard, London, EC2A 3EA
A conference for people with lived experience of psychosis, family, friends, therapists, nurses, psychiatrists, psychologists, social workers, OTs, the voluntary sector and other supporters.
A mix of people with lived experience of psychosis, ‘carers’ and professionals who will speak from their own experience of these issues to stimulate frank, respectful and open discussion.
This event provides a safe and inclusive space where we can respectfully hear from many different voices. Rather than filling the air with information, we want to create an opportunity for meaningful discussion stimulated by the input of people with varying types of experience. We want to openly explore a) what gets in the way of walking alongside one another and b) how can we address this?
Issues explored will include: language; power; risk; participation; culture; beliefs; rights; respect.
Theme 1: ‘Us & Them’, or ‘Only Us
Theme 2: ‘Whose Journey Is It? – Care, Ownership & Control’
Theme 3: ‘How Can We Walk Alongside? – Examples from Real Life, Big & Small’
I will end my blog today by posting a link regarding the CEP (Council for Evidence Based Psychiatry) and I am so pleased to read this – at last recognition is given but when I hear comments like “slowly but surely – things take time to put in place – you cannot expect things to happen overnight” I would say rubbish as I have read in the files on two occasions how action has been put in place immediately – this is done when there is an emergency or when something goes wrong. So in my view this is an emergency that the Government needs to address and to act upon immediately and as a matter of urgency as some young people currently in the UK are being wrongly incarcerated long term in un-therapeutic institutions worse than any prison, where they are not allowed phones or family leave/contact – in these institutions patients are drugged enormously and written off like rubbish and I would like the Government to act on such cases immediately as a matter of urgency. I would accuse the Government of breach of human rights as when a patient has not done anything seriously wrong why should they be locked away for so many years and deprived of leave and just left to go downhill. How many such cases are there and how much is this costing the taxpayer? Such cases are not publicised in the press and parents I am in touch with would be happy to give publicity if something could be done about their situation. Elizabeth was written off like rubbish from what I can see from the files and now look at her attending conferences etc – this shows that anything is possible and there are some families who need support which would work out much cheaper than the cost of long term hospitalisation. How much is a weekly stay at a hospital as opposed to raising carers allowance or giving direct payments to be spent on activities of the patient’s choice? – I think direct payments is an excellent idea which could provide assistance to get Elizabeth out places during the week but I disagree with a social worker’s comments “she is happier with her own kind” – I cannot think of anything more stigmatizing coming from a professional Direct payments would be cheaper than long term hospitalization where a patient comes out of the system disabled.
Here is the link below for the Council of Evidence Based Psychiatry:
CEP APPOINTED AS SECRETARIAT FOR ALL PARTY PARIAMENTARY GROUP FOR PRESCRIBED DRUG DEPENDENCE