Monthly Archives: October 2014

I had taken the time off from work today as there was a visit planned from the consultant psychiatrist and someone else from the Team.

The visit went much as planned.    The visit was to discuss an easier way around the problems of the drugs and Elizabeth is on a drug called Clozapine that requires close monitoring.  It is a drug that she was put on against her wishes in a hospital that she herself calls “Hell on Earth” situated in Beckenham Kent.  Elizabeth signed an Advanced Declaration before going in but that is not worth the paper it is written on.

Anyway getting back to the meeting – it was a meeting to discuss an easier way forward.     For the past 6 months I have had no help or support from anyone in the team.  I have had to rely on close friends and family and they have been brilliant.  I am only too aware that if I did not have so many good friends Elizabeth would have ended up back in the care home where she was no longer happy.

It is thanks to my friends she is still here as I work full time.    In some says it is a good thing that I work as it takes ages to get anything up and running under services and otherwise I could not provide anything. For instance when Elizabeth came home back in May I went immediately to see the Carers Centre but then they told me it would take six months when I recently enquired as to a certain scheme they had which worked well before.  I would rather know that Elizabeth is in good company whilst I am out at work to be honest but I am not biased towards people with mental health problems either as I regularly meet with those who have been through absolute hell.   I thoroughly admire them and these people although older than Elizabeth can offer the correct guidance as they have been on the wards and have been through hell themselves.  Peer support –  well I like this very much and wanted  an advocate who really understood what Elizabeth was going through – a former patient and this former patient who may well be looked down upon by certain professionals gave brilliant support to my daughter and wrote email after email in her support –  in turn I learned who was who.  I could not believe how many people were copied in to emails especially when you have an issue of complaint.   It is a waste of time writing but the best thing to do is attend the AGMs.  This way you can avoid correspondence that does not deal with your immediate complaint and is in effect totally ignored.


It is regarded as a sign of mental illness so I see it.



Poor memory


Not thinking straight

Losing things

Failing to complete College

Tired and lethargic

Poor motivation

People are against the person concerned

symptom:-…………………………an allegation of rape/abuse under a hospital by a member of staff! From what I have heard from others this can happen but it is all to easy to ignore such things.

Oh my God there are so many things.

The more I read the more I want to know more!

Mood:  –  Irritability – agitation, anxiety, perplexity incongruous affect, restlessness labile affect –

Lack of Insight – Denying she has any problems – not acknowledging risk of own behaviour

Constant symptoms mentioned – memory and agitation. rocking in her chair, touching her face and hair, though disorder.



At the National Psychosis Unit they claim she was given a drug free period and that is not true. Mixing drugs together can cause a bad reaction to anyone.

THERE IS NOTHING WRONG WITH MY DAUGHTER.   Six months at home mixing in with people who do not have any MH problems and she behaves 100% normally.

She has lost her confidence and suffers from Agoraphobia to the point of feeling sick before going out.

I do not agree with personality disorder as the only time I saw this was on the drug Cipralix and this was ages ago now.

I  will always dispute the diagnosis of Schizophrenia as no bio marker has ever been found to prove it. Treatment resistant is poor or bad metabolizer and I would like to see tests done nationwide like in Liverpool.

Suddenly the diagnosis of “treatment resistant is dropped”

My daughter is happy at home and if more support was given to families then more families would be able to do what I have done.  It is a very sad situation when intervention by a team in a way I cannot document and all too commonplace can have detrimental effects on the family as a whole.  It is all about communication and how you go about the situation and  by threatening and bullying undermines everything.


Elizabeth has been at home now for 6 months .   “I’m so happy to be at home, Mum”.  I have introduced Elizabeth to many of my friends, some of whom she has known a long time and others who are new friends –  people I admire, those who have suffered abuse and trauma.  I like to call them “Survivors”.  Many people offered to help me when Elizabeth wanted to be at home again after three years of “care” that I would call “imprisonment”.   I would like to advise all mothers who think that the care is better elsewhere that unfortunately this is not the case and I naively thought care would be better under private sector –  well I was wrong there and I have previously documented about this private sector care.  However Elizabeth is on a lot less drugs than before although the Clozapine is too high and despite having previously 3 consultant psychiatrists under the Home Treatment Team noone has taken any notice of the fact that Elizabeth has stopped smoking.  I read a shocking article about someone who suffered from Clozapine poisoning –  well I am just a mother but I did not know about this –  I knew about the cessation of the chemicals but not about stopping smoking otherwise I would have brought this to the team’s attention and constantly reminded them.  With all the attention I have had recently from the Home Treatment Team I am sure I mentioned about her stopping smoking so I am amazed that this has not been dealt with before now.  At the care home lots of people were smoking and so was Elizabeth – now at home there is no need for this or the Lorazepam as and when required – or the Bisoprolol beta blocker.     I am delighted to tell everyone that today Elizabeth came out with me without the usual performance where she will physically make herself ill.  I put this down to one of my “carers”  – she has been round to the house whilst I was at work taking Elizabeth out for long walks and it has obviously done her a lot of good.    I cannot thank enough the many friends who have helped and supported me over the past months to enable Elizabeth’s return to home be possible.    All of my “carers” have remarked at what an improvement.   It makes me think that if someone from the mental health was placed within a suitable “family” environment that they themselves could get better rather than on an acute ward which should only be used short term. Anyway everyone should be treated individually.  Some may like the drugs and agree with labelling, others may not.  Some may prefer an acute ward – others may prefer a therapeutic community.  My point is there should be choice and there is not.  Elizabeth has been left long term on such wards and this is where the investment needs to be made in the community.    Something should be done about community care.  It is the system that is wrong and I can say exactly where the money is being wasted that should be spent on the NHS.   If private sector care is all about drugging too then this is no different.  Elizabeth was not given the choice of holistic care in Wales –  there needs to be choice and there is not choice in the UK as an acute ward and enforced drugging and labelling does not suit everyone.     The only way for a politician  really to determine what is needed is for that politician to spend a week on an acute ward –  I would like to see a politician do this and then do something about the situation.

Which Government cares about MH?.   Well I want to see proof –  a Government who cares would offer a room to discuss the way forward with mothers, fathers and patients and the way forward in my opinion is the example of Finland – a small area of Finland called Tornio where I want to take Elizabeth to see what humane care is on offer there and Open Dialogue. Anyway I believe action speaks louder than words and am fed up with hearing comments and no action.

Today we have met with the group of survivors who have been helpful to Elizabeth – tomorrow Elizabeth can visit her grandmother  in hospital.   Both grandparents are in hospital right now and at least she is nearby.

I am going to take Elizabeth to see a fireworks display soon and unlike last year I am looking forward to Xmas.  Times like this have been a problem when someone is hundreds of miles away and a good part of that time is spent in travelling there and back.

I have had some good news today and am so happy.  I am even more happy to see the progress of my daughter who I want to see live an independent life one day and in order to regain her confidence I have appointed a personal trainer to come to the house during the week.

There are many stigma campaigns but I believe the way forward is integration and not just encouraging someone to mix in with people who have mental health problems but society as a whole as there is much ignorance.  The press do not report things correctly and I would welcome anyone to meet me and to see for themselves what is really going on –  I would welcome trainee nursing or psychology students to be involved as I think what better training could they have but to see the full picture and  you can only do that if you personally get to know the family.   “She will be happier with her own kind” – these are words  from a professional.  Away from MH environment it is important to note that Elizabeth  has shown nothing but normal behaviour and I as a mother  have read u p on the causes of psychosis and everything I have seen has been the result of the mind altering drugs.  It is no wonder why this is the case as Elizabeth is “.chronic  treatment resistant” which means poor metabolizer and I want something done about this situation and proper assessments given.  I do not want any more of these chemicals given without proper tests done and these are being conducted in Liverpool and should be conducted nationwide .  When I enquired about these tests locally I was shocked that GPs and consultant appeared not to have any knowledge about these tests.  Anyway if I have to go to Liverpool again I was most impressed with the professionals I met  at the INTAR Conference and the social workers there who want to see positive change.  When I last enquired the Professor was out of the country and I hope is back now.    The|  Neurologist appointment has been made but before any drugs are given I  need to check with the Professor from Liverpool as Elizabeth is a poor or non metabolizer and I need the most up to date information first and when there are so many different diagnoses in the files I need accuracy as if the wrong diagnosis and wrong treatment is given this could do more harm than good.  I want the P450 liver enzyme test done and to know that my daughter is getting the correct treatment after so many different diagnoses and drugs that do not work.

Yesterday I decided to take Elizabeth to the Chocolate Show held at the Olympia Exhibition Centre.   I was already in this area first thing in the morning and had to go back to collect Elizabeth for this show.

“I liked the fashion show very much and watching the demonstrations.  We then went to a tasting event held by Hotel Chocolate which I enjoyed.”

It was great to show Elizabeth around the surrounding area that I know so well as I spend so much time there.

Today we have been up very early to go to the gym for a class.  In the afternoon we had a visit from a personal trainer I have appointed to come to the house.  Although I have joined Elizabeth in local gyms, she does not get use out of them so having a trainer to come to the house will be a very good thing.

I have hardly been at home this weekend as we have been out most of the time but I would like Elizabeth to regain her confidence and independence and there is only so much I can do but I am very pleased that Elizabeth has not got to the stage where she completely refuses to go out at all.

With nothing being provided it is left to me to try and provide things to do while I am at work and at the weekends I take Elizabeth out places.  She thoroughly enjoyed the Chocolate Show and the costumes were fantastic.

I am hoping that the new trainer will help Elizabeth so that she can come away with me –  I would like to take her to Finland to see for myself the wonderful care on offer in Tornio.

Elizabeth flatly refused to walk up the road halfway on her own and even walking to the end of the driveway she could not do and only walked to where the car was parked and just grabbed hold of the car.  She has complained of double vision and feels like she is going to fall.  She certainly has a deep fear of going out and that needs help and encouragement.   Today I had to go shopping and buy some presents for friends so we went to the local town in the car and to begin with Elizabeth felt very ill and later she was OK once out for some time.  It takes a while for her to settle down.  So I had done the shopping and there was somewhere Elizabeth wanted to go today and I decided to take her straight there afterwards.  It was really just a sales event and there were various things on to attract new customers as the venue had new owners.  Elizabeth said she felt hungry and there was a café inside.  I ordered food and we waited and when the food was brought over to us Elizabeth could not eat without feeling very ill to the point of feeling sick.  I had to abandon our table hastily with her to the nearest toilets and was not too impressed when I got back to find the food had been cleared away despite me telling someone there.  Fortunately the food had not been thrown away so Elizabeth was able to take away some of what she could not eat.  From this venue we have just arrived home and I need to in a minute wrap these presents up as friends are coming round tonight.   Whilst we were driving back in the car I wondered how the care home coped with this kind of behaviour that I am seeing more and more on a regular basis the same thing.  How do you get round this behaviour –  well I made a point of asking what the care home did and Elizabeth told me they were very lenient with her and that is her own words.  All I can say is that I do not believe in just saying OK do not bother then.   No I believe in getting her out no matter what as always she enjoys herself once out and once settled down.  It is not like she is this way all the time and therefore I think I am doing the right thing by insisting that Elizabeth comes out with me somewhere or does something.  She would go nowhere otherwise and when I asked about the care home apparently all too often when Elizabeth said she did not want to go out they accepted that or maybe they tempted her with the chemical Lorazepam as and when required.  Well she is not going to get over things unless she goes out somewhere in my opinion.  How ever is Elizabeth going to have a normal life if she does not go out anywhere.    So today I contacted an organisation who send personal trainers round to the house and I am hoping to hear from this organisation.  Elizabeth will be able to do some fitness exercises and maybe this trainer could even take her to the park just up the road where they have outdoor gym equipment and this is very good for fitness exercise.  I hope that I hear this week from these people so that I can quickly arrange what is needed and what I myself cannot provide.  If Elizabeth had remained any longer institutionalised things could be even worse as this “fear” could deteriorate even more at least Elizabeth wanted to go to this place and did not refuse.  What a shame she could not enjoy the lunch at this venue.  So far the very best care I have found is in Harley Street with Susan Hepburn.  I am going to see what wonders these personal trainers can do with my daughter first as clearly the chemicals are not working at all –  only on Abilify did I see symptoms of bulimia or anxiety to this extreme  and never before have I seen dizziness to the point of disablement.  This chemical is not doing any good and I intend to report these important issues to the FDA –  with Elizabeth being treatment resistant this could well be the reason and not only will she need an appointment to see the neurologist but one in Liverpool and I must check to see if the Professor concerned at Liverpool Uni is back yet.   I forgot to say that the new social worker is coming yet again on Monday in my absence.   I will tell Elizabeth to write down things that she needs.  Last time there was a person centred approach that went on for six months and nothing was provided so Elizabeth needs to write down what she needs so that something is provided otherwise once again nothing will be given just like before.   I must arrange with my carer to pick up the chemicals from the hospital –  now things are different no longer can I have the convenience of collecting these drugs even though at times I had to wait around for ages -I still think this was the best arrangement as it is expensive to provide carers to do all this running about on my behalf on top of everything else.

There is such a thing as integrated care in the area where I live and I just do not think this works – the care does not seem to be in the hands of the doctors/nurses any more and this led to deprivation of treatment because an assessment was declined by non-medical personnel in the first instance.  I was forced to have to look for private care and then when this failed in order to obtain the drug Clozapine on the fourth day I had to look for solicitors to help in the matter as this could have caused serious injury when no one neither- medical or social care professionals cared.

Recently we have been subject to what I see as bullying/harassment/intimidation which according to the Manager of the Home Treatment had nothing to do with her and orders were being given to her team elsewhere.  I have reported this previously on my blog about phone call after phone call and visit after visit but I recently had to report to the CQC about my fears of the difficulty in obtaining the drug/ blood tests now that care had been transferred to another team – community MH team where the “treatment” has to take place in another area miles away.  This gives immense difficulty to my carers as Elizabeth is suffering from Agoraphobia and not all of them drive – this has to be dealt with during the week and I work full time – surely a better arrangement could be made but it appeared not when I called at the local MH unit.  I was told that I had to go to the neighbouring borough and take Elizabeth there for a blood test –  I was then given a supply of packs that enabled the blood test to be undertaken at the local hospital but I had to get in my car and drive to the neighbouring Borough.   I now have to arrange for one of my carers to have to go all the way to the local hospital as the Pharmacy is only open Mon to Fri 9.00 am until 5.00 pm and I work in Central London.   Before I could go and pick up the drugs from the MH unit on a Saturday.  This was a good arrangement.

So my experience of integrated care is terrible.    Life threatening to the point that no one will deal with you –  uncaring when a former patient’s wishes are not listened to.   I hope that the CQC will look into this thoroughly and what has been going on and I have messages etc to prove it all.

This week I received a recorded delivery letter from the community MH team consultant psychiatrist and recently we have been advised of a new social worker – one who has not directly been involved in the initial incidents.   So I picked up this letter on my way to work until to read that they were coming round the same day to my house.   No notice given so how could I get a day off work without having any notice whatsoever.  My carers sometimes take Elizabeth out so on the train on my way to work I had to telephone and make sure they were in as they announced they were arriving at 11.00 am.  I then tried to rearrange this appointment but no one bothered to ring me back.      So despite  my attempts to cancel the meeting went ahead without me being there and the letter said “how best they could help”  –  after five months not one ounce of help has been given to the family or to Elizabeth and it is cheaper for her to be at home than in an institution and would not cost a lot to provide just a little as what is needed most of all is someone – just a young person to come and take her out somewhere and encourage this.    I am disappointed as there is no help through the local carers centre either whatsoever.  The first thing I asked about was their scheme where they appoint someone to call and take the person cared for out for an evening or activity of their choice.    When Elizabeth came home and did not want to return to the care home this was one of my first places I visited as I remembered this worked well before previously but now the previous provider has been taken over by the Carers Centre and most of their activities are during the day and I benefit from nothing.  Recently we visited on a Saturday and I had to bring Elizabeth along to this.  They had like a drop in centre and buffet lunch and I wished to question about how things were progressing for this scheme and they could not answer my question as the person concerned was not there.    When I contacted them during the week I found that they claimed never to have received my form.  I was told they would check their records to see if I sent it in or not.   I responded that I keep excellent records myself and that I would do likewise.  They then said that they had not received my form at all that they had no record of my request whatsoever.  Previously I spoke to someone else there who I wanted to act as a mediator for me as I could not bring myself to speak to people who had put my daughter’s life at risk the first instance. We discussed this scheme they had to provide like a “buddy”.  So I checked my records having been told there was a six month waiting list for this scheme and when I checked my records I  had sent the form in on the 29th of July.  When something is funded through councils I suppose I can see why there is no help – in fact there may be help for others but not in my case at all – no help whatsoever from anyone in this Borough.   I hope the team are reading this as they know all about my blog.   I do not trust sending in the new form by post and so will have to get someone to hand deliver it to the Carers Centre and that way I will have a witness that it has  been delivered and on what date and of course there will be a six month waiting list and Elizabeth will be at the very bottom.

The meeting went on in my home without me being present like I was saying with a carer present who reported back to me everything just like the home treatment team were reporting everything back.   So the consultant psychiatrist and new social worker turned up like they said in their letter and talked about a reduction in the chemicals.   I have pointed out but to no avail to the three consulting psychiatrists from the Home Treatment Team that Elizabeth was experiencing dizziness on these drugs and the advice of a leading expert who claimed it could be because the level of the drug was too high.   Now it has come to their attention Elizabeth has stopped smoking since coming home from the care home where everyone smoked.  This apparently affects the level of the chemicals and therefore this means there could be the possibility of a reduction which I am delighted about.  I am hoping that Elizabeth can manage on less chemicals after all she managed without any at all thanks to the team in the first place when no one wanted to give them despite my efforts.    So I am happy about this and the consultant psychiatrist said that the reason the visit was arranged so hastily without any notice was due to the fact she was about to retire.  The new social worker questioned Elizabeth on what she enjoyed doing.  The fact is she is not going to hear everything that is needed and it is not much. What is needed is someone to come round and take her out a couple of times a week places and accompany her for a few hours.  Surely this would be cheaper than what the private hospital and care home would cost?   I do my best at the weekend and it is not easy sometimes to persuade Elizabeth to come out.   Today she flatly refused to go to the gym for the early morning class.  I have given her two options – either you come to the gym with me or you walk halfway up the road on your own.  Yesterday I had to do the same two options – either you go for the gym induction or you come out with me to meet the survivors group I go to.  In the end she chose the latter.  Now I have said that I need to order a trainer to come to the house as I am paying £30 a month for Elizabeth’s membership at the gym and it is a waste of money if she refuses to go just once a week and so I would rather pay for someone to come to the house – a personal trainer who would take no nonsense.  This has to be a young person of course and I am going to look for this next and organise this so that Elizabeth does some exercise during the week whilst I am at work.    Today she wants to go to an event nearby that has lots of things going on and I would have to drive there and I have agreed to do this.   A friend and one of my carers who is not a young person has just telephoned me to say she has three times offered to take Elizabeth out during the week and each time she has refused.  There is no way on earth as a mother I want to see her refusing to go out altogether and I am determined that this will not happen.

So getting back to the new social worker – this professional apologised for the short notice in an email to me.   I had written and requested that in order that she gets to hear what is needed most of all she needs to speak to everyone in the family not just me and I have given her some dates when I can possibly get yet another day off from work.  It is one thing asking Elizabeth what she enjoys doing however there is a problem at the moment as not only myself but my carers are having trouble in getting her to go out anywhere and I am not the kind of person to take no for an answer but I do give choice.  I cannot drag her out of bed to go to the gym so I have given her choice and that is fair in my opinion.   The choice I am not allowing is to lie around doing nothing at home.  When I am at home I have things to do and there is no time for myself any more but I am not complaining as I think this is not a huge problem at the moment but could be if I was to say OK then you stay in if you want to .  I would like Elizabeth to have a normal life – as near normal as possible so how is she going to regain her confidence if I just take no for an answer.  Every time I take her out it is painful for me to watch –  someone with such fear of going out for no reason other than lack of confidence, feeling dizzy on the drugs – getting herself in such a state she is ill yet once out with me she has a great time and gets to meet wonderful people like my friends and going out for nice meals, seeing interesting places and going on fantastic courses such as INTAR and ISPS – I expect at the care home and hospital in order to get her out this is where the Lorazepam came in “as and when required”.  I refuse to give this highly addictive chemical on top of the chemical she is already on.  Elizabeth soon forgets her anxiety and even amongst huge crowds and it was busy last night where we went and we had to go on escalators and Elizabeth is afraid of heights.  I believe in perseverance in order to overcome fear.

Now I am going to turn my attention to the system of benefits.   I as a mother would love to see Elizabeth in a job earning money and she did once have a job and worked –  I know it is not possible right now.    If I was not here to help nothing would be done as only now  have I had this letter after five months of being home that certain professionals wish to know what help is needed.   So ATOS is the organisation used for dealing with PIP claims and there is a six month waiting list due to backlog so I was told.  In order to get this you have to justify whether someone is disabled or fit to work and this should be interesting.   As no one was helping I telephoned.  I have dealt with the application and I have  been told that an assessment will be required.  Like I have documented there are good days and bad – times when I can get Elizabeth out and other times when it is very difficult and all the time Elizabeth clings to my arm as she thinks she is about to fall and claims the drugs are affecting her sight and she has a fear of falling to the ground.   I hope that they will send their assessors to the house to see her and I have no idea if they will announce that she is “fit for work”  –  I intend to inform everyone of their decision.   I would be overjoyed if my daughter was fit for work as I would love to see her move away from the mental health care system.  If I did not work myself I could not do anything with Elizabeth right now but it is so hard and it is made hard by a system of care that does not care at all and does not appreciate the impact when the family and person cared for are getting on OK and that all is needed is a fraction of what could be spent elsewhere. In other words a saving to the taxpayer and I myself am a taxpayer and am interested in seeing where money is wasted and where it could be better spent.    Without Elizabeth venturing out on her own anywhere – a prisoner of her own mind –  how can she work  –   in order to work you need to be able to concentrate to a degree on what you are doing – how can Elizabeth concentrate when she is on a last resort chemical that makes her so tired and dizzy she has to lie down after taking it.    I would like to see her do some voluntary work either with animals or in a charity shop such as Mind.  I tried to get jobs for her even whilst she was in hospital but now she is home –  there is more hope however Elizabeth is more disabled now and that is what hospitalisation has done for her.

Anyway I am now going to look for this personal trainer for Elizabeth to come to the house during the week.


Now that Elizabeth has been home 5 months things should be running smoothly but this is not so.

Elizabeth needs monthly blood tests otherwise she would be refused the Clozapine.   When she first came home I immediately took her for a blood test at the local hospital but the Pharmacist refused to give the drug and so did the consultant psychiatrist and two others he had in the meeting.  I had to take her to Harley Street where I tried to get private care in desperation.     Now there has been a change in the care and the fact I rely on “carers” in the form of close friends to help me look after Elizabeth whilst I work I did not want there to be any further problems like last time so I needed to sort things out and you cannot do this effectively over the telephone.    It is not a good arrangement that Elizabeth is expected to go to a neighbouring Borough which is a fair distance away from where we live.  It is a lot to expect for my carers to have to trapse all that distance away in addition to what they are doing for me already as there is no help in this Borough.    First of all I went to a team based in this area only to be told she had to go to the neighbouring Borough and there was nothing they could do.  I then went to the Council as not one councillor had bothered to help me before when there was a problem getting the drug which left Elizabeth without for nearly 4 days.  Of course no one was available and I have not had a call back.    The team where Elizabeth has now been transferred to from the Home Treatment Team said that it takes time to put anything in place.  Well I said it has been 5 months now –   I spoke to someone I had not spoken to before however this team are now responsible for the provision of the drug and blood tests so if I am not told of the blood tests and that the drugs are there for collection it means that my carers will have a wasted journey and I do not want them to be messed around or my daughter left without this drug and back to square one where they have to re-titrate because no one wants to help.   I then went to the local hospital and felt that they had transferred my daughter to another team but if the other team were not helping in terms of arrangements where my carers could collect the drugs and have the blood test done nearer to home that I could not see why this could not be done at the local hospital as the arrangement did not seem to be working out.   I was told that there was nothing that could be done to help me and was offered a taxi but I drive and was put in the position of not having any choice but to go to this neighbouring Borough on this occasion.   The person from the “new” team did not phone back and neither did the Councillor.   Elizabeth could never get to this place in the neighbouring Borough herself and relies on people to take her and she has been stuck in a hospital environment for over three years and so suffers from Agoraphobia.   Sometimes she makes herself ill before going out places but always calms down but it takes a while for her to do this.   Eating out is the same and today I was taking someone out for their Birthday.  It is very sad to see this –  a lovely meal but always Elizabeth appears to make herself ill.  I am trying my best to help restore her confidence and take her out at every opportunity but to go to an appointment on her own –  she will not even walk up the road as she feels like she is falling and feels dizzy all the time because of the drug she is taking.  She said her biggest fear was that she did not wish to fall and this is sad as she is missing out on sport and activities –  she is limited to what she can do and cannot walk far –  she gets very tired but at least she is not asleep in the afternoons and in bed by 6.00pm.   After going to the local Council we went to the hospital but  the Pharmacist – again refused the drug in the first instance  despite the blood test once again refused and said “we have had this similar conversation before as I remember”.  He could not stop smiling and I did not think was very nice or appropriate especially as he was refusing treatment and I felt in the first instance this was against medical ethics.   When a hospital has washed their hands of my daughter if she was unable to get the drug or blood test who is responsible.  Noone should refuse treatment putting someone’s life at risk.  Anyway I decided that I was not going to watch daughter’s life being put at risk again by a team who would not step in if once again a situation arose like last time.    We just came up against one brick wall after another leaving me with no other option but to give a certain ultimatum.     After being refused this drug we then went across to the mental health unit  where I hoped a better arrangement than having to go long way away to have a blood test and get the drug prescriptions in hand could be made.  I was told there was no other way and my daughter would have to go to the neighbouring Borough.  So they make no allowances here at all in this area.   I complained about the recent harassment as well and felt that the care was not under the control of the hospital as it should be.    When things like this happen and someone is deprived of treatment as in the first instance where we could not get the drug anywhere who do you turn to.    Well I turned to every single leading politician –  only Mr Lamb responded and mentioned about the CQC but apparently the CQC cannot look into individual cases –  well why on earth not?    It is simple I do not want a repeat of last time and had to take a day off work to sort things out.

Today I received a letter from the Director of MH who called the care holistic well I do not think it is holistic at all.   This is the care locally – Cipralex, Risperdal, Abililfy, Olanzanzapine, Quetiapine, Promazine, Clonazepam, Diazepam, Lorazepam and a skin medication the GP forgot all about until I reminded her as this should have only been given short term.  What is holistic about this?   When someone is treatment resistant they cannot metabolize the drugs and there is a research programme that all mental health trusts should be interested in going on at Liverpool University and tests should be given to patients before being put on one drug after another and the reason they do not work –  well they do not work if someone clearly remembers a event that happened years ago so they could be saving a lot of money by giving far less drugs which could have implications and place a burden on other areas of the NHS.   I am appalled that Elizabeth has been offered yet another drug only recently –  I should have asked this consultant psychiatrist what this drug was but an expert thinks it could be an anti muscarinic or anti-parkinsonian drug  – this is not good so I sought expert advice about this and I have asked the GP to refer Elizabeth to see a Neurologist.  It is sensible not to give any more drugs in the circumstances.    Anyway it is not just local care where the care is far from holistic –  below are other examples of anti-holistic care.

Under the Bethlem she got put on Metformine and Clozapine but first of all they mixed the Quetiapine and Olanzapine together which caused psychosis.  No wonder it is called the National Psychosis Unit – they caused the psychosis and slapped on a section, banning me from visiting my daughter.

In Wales under Cambian the same treatment carried on except the consultant psychiatrist who tried to stop me from seeing my daughter and I have all the proof –  this consultant psychiatrist increased the Clozapine to 350mg.  Only recently one consultant psychiatrist offered a new drug for my daughter for a physical condition no doubt to be mixed with the chemical Clozapine but the first thing I would check out is if the drugs were contra indicated because no one – no GP could find any reason why she was on an off label drug for so long.

So I told the Director of Mental Health that under his hospital my daughter had been put on lots of drugs despite being “treatment resistant” (poor or non metabolizer).

At the care home they put her on even more drugs including a heart drug called Bisoprolol and Senna and highly addictive Lorazepam as and when required and she was smoking there and an expert told me that smoking can affect the level of drugs so at home she is not smoking and is not on the highly addictive Lorazepam as and when required.  Elizabeth has something far more therapeutic – her cat.

Anyway I passed on to the Director of Mental Health information regarding the wonderful courses myself and Elizabeth have been on recently ie INTAR Conference Liverpool and I was most impressed with this and I was delighted to see what wonderful professionals there are there who wish to move forward with the times.   In Leicester recently at the ISPS Conference I met Professor Read and Dr Jaakko Seikkula as well as Dr Marius Romme – well I was most impressed and it was good for Elizabeth to meet with some wonderful survivors such as Rachel Waddingham.   I have said that these courses could benefit professionals under the local team as long as he made sure new practices were put into place such as open dialogue and only then I could agree with him about his holistic care.

So my day off as you can see has been taken up with hanging around and waiting to see people and then having no choice but to go all the way to the neighbouring Borough in order to get the blood test out of the way and I have a supply of these packs now.  However there has got to be a better arrangement and I am still not happy even though staff were helpful once I had got there in person.   Before I had arrived at this place and before a Manager had seen me in the MH foyer no one rushed to help and if this had been my carers this would have been a bad situation and distressing for Elizabeth.  I noticed a phone left on the side and asked if I was being recorded!   I was told they recorded everything there and found this very amusing.   Anything between a nurse and patient should be kept confidential in my opinion however when a blood test is due and I need to know about this then it is bad if there is non communication as to procedures and the collection of drugs resulting in distress and hassle for not only Elizabeth but the carers.  I believe the CQC should investigate and look into cases whereby treatment is declined and when you come out and say this members of the team do not care and this is very worrying when you feel that a team will refuse treatment putting someone’s life at risk and then an organisation such as the CQC are dismissive.  Although I have to say that the second person I dealt with from the CQC responded extremely well to me over the phone –  it is a good thing to draw such problems to the attention of people such as this and I would go one step further – the next time I attend a conference I would get up and speak about it in front of professionals as I may be just a mother and someone that the team do not like however I want to see an improvement in the current care system and I know that this can only be possible at senior Government level.  When no one can help you in a crisis situation leaving you to have to try and find private care for treatment then there needs to be a system where there is someone you can turn to such as the CQC who do in fact have the power to intervene and do something.

It was mid afternoon by the time I had sorted all this out and we went out for a nice meal –  I was meant to go out tonight but do not feel like it now.  It was a lovely day but on such a pleasant day it is a shame my time was taken up with unpleasant matters concerning my daughter.

Tomorrow I will be doing classes with Elizabeth at the local gym and she also has the opportunity to do personal training but Elizabeth feels very tired at times however the class bright and early on Sunday morning was good for both of us –  Elizabeth had to move away from the wall as at the zumba class the day before she was in a tight corner and refused to budge but at least she attended.   I am arranging some classes for her at home during the week whilst I am at work.  I think this is the way forward to regain her confidence.   It is a pity I do not live near the wonderful Bowlby Centre as I would arrange for an expert to come and see my daughter as I was most impressed with their course I attended not long ago.

So tomorrow will be a nice quiet and peaceful day – no hanging around hospitals waiting –   I am so happy I have got this out of the way.

%d bloggers like this: