Back in April 2014, Elizabeth had leave from the care home and I took her to Woburn Abbey but we had to leave early as she was feeling ill. She appeared highly anxious, felt dizzy and could barely walk. She could not relax or enjoy the day out. It is not the first time I have seen this and been concerned for her physical health. It was a beautiful hot sunny day yet when we arrived home Elizabeth complained of feeling cold. She put on a thick winter coat and scarf and sat out in the garden, her hands like blocks of ice.
I returned her to the care home but, following her return I experienced difficulty in contact which I was later told was due to a bad signal in her room. I was concerned that she was in bed by 6.00 pm. Something did not feel right. On a previous visit home, Elizabeth mentioned a nurse putting pressure on her but would not emphasise further. So I arranged another weekend’s leave and her booked in for an appointment to see an Endocrinologist. I was interested to know why she had been prescribed 500mg Metformin off label at the Bethlem Royal Hospital. The team said for this was for “weight loss” but I knew this was contra indicated. These drugs continued to be prescribed whilst at Cambian and I knew the drug Metformine was for diabetes. The GP in Wales was also not sure why she had been prescribed this but was told it was for weight loss.
8th May 2014: –
Elizabeth’s sister collected her from the care home hundreds of miles away and she stayed with her grandparents. The next day we saw the Endocrinologist but when Elizabeth showed me the drugs chart I was not happy. There seemed to more drugs prescribed than I could remember previously. All we were given was Metformin and Clozapine whilst at Cambian but she was granted hardly any leave and had none at all whilst at the Bethlem Royal Hospital. Now suddenly there appeared Bisoprolol, Senna and Lorazepam (as and when required) on the drugs chart so I telephoned the care home but was told “we are not speaking to you any more – Mr B is next of kin”. I then asked a firm of solicitors to investigate and their findings led back to the local social services department which did not surprise me, as it was this department who had made repeated attempts to displace me as Nearest Relative in the past. As Elizabeth was discharged from Cambian not on a CTO and I thought they might be trying to arrange a CTO or do something worse like restrict contact and make further attempts to displace me once again and I was correct.
9th May 2014 –
The Endocrinology appointment went well and I was rest assured that I would soon have the results seeing as this was a private appointment. Elizabeth’s supply of drugs from the care home would run out on Sunday 11th May.
10th May 2014
Elizabeth said that she was no longer happy at the care home due to a nurse putting pressure on her to choose between Mum and Dad. She said she did not wish to go back so I told her that since she was not on a section that she did not have to go back and could stay at home if she wished.
Sunday 11th May 2014 – Day 1 without the drug
I was due to take her back to the care home. Drugs would run out that evening and I had spent most of the day on the phone talking to Crisis/Home Treatment Teams, NHS England and emergency out of hours social services, none of whom could help me and advised me to return her back to the care home. Eventually I spoke to the Manager of the care home but, despite offering to drive hundreds of miles there and back to collect the drugs, he refused to give them stating “it is more than my job is worth”. I knew that if I returned Elizabeth she would be sectioned. That evening I drove to two local hospitals to try and get a supply of the drug Clozapine but failed to do so.
Monday 12th May 2014: – day 2 without the drug
I took Elizabeth to the local GP and got her registered. I obtained a prescription for the Clozapine but nothing prepared me for what was about to happen next. Whilst at the Doctor’s surgery, the social worker called demanding I return Elizabeth to the care home “get her back we are paying for that”. I refused because Elizabeth said she did not wish to return there and refused speak to the social worker on the phone. Later that day I received another call from the Manager of social services who again demanded her immediate return to the care home and said I would not be able to obtain the Clozapine anywhere in the local area.
I had already taken Elizabeth to the local hospital where she had undergone the blood test necessary in order that Clozapine can be prescribed. However, when I presented the prescription to the Pharmacist we spent hours waiting until finally be refused to prescribe the drug. He mentioned his conversation he had with the Manager of Social Services and said he could not help me, his excuse being that he could not get hold of a Consultant Psychiatrist which was necessary in order to prescribe the drug. I felt sorry for Elizabeth as we had spent all day waiting in that hospital but I was determined to get her to see a consultant psychiatrist so we then visited the mental health. We again waited a long time, until finally a consultant psychiatrist saw us along with two other members of staff. By this time it was late evening. I was advised by him to take her back to the care home. He said there was nothing he could do and that as it had been over 48 hrs, she would need to be retitrated from scratch. I said that this was not true as it had only been c26 hrs without the drug but he refused to listen. We had no choice but to leave the hospital and come back home without the drugs.
Tuesday 13th May 2014: – day 3 without the drug
We again visited the local hospital Mental Health Unit in order to speak to the Director of Mental Health to see if he could help. I was getting concerned now at the length of time Elizabeth had been without the drug. She was becoming drowsy. It was not fair on her that she was having to sit around waiting hours only to be refused the drug time and time again. We were this time waiting a long time to see a member of the social services team in order to do an assessment but then we were given the news by the Assistant of the Director of Mental Health that he could not come. It was midday by this this time, so I ordered a cab to Harley Street where knew we would get to see a private consultant psychiatrist immediately and hoped he could help us. On our way there I received a call from the social worker who failed to turn up and explained what we were doing and that I would be left with no choice but to take legal action individually against him and two others who appeared to be standing in the way of “treatment”. Whilst I am not happy with the “treatment” of my daughter who is mentioned in the files as being “chronic treatment resistant” and on a last resort drug (Clozapine) in this respect, I knew that if she was left without the drug much longer she could suffer injury. I had to extend my holiday in order to deal with this problem. I had been in contact with someone that day who is an expert on the drugs. He advised me that if this situation was to continue any longer this could result in injury. The rest of the family were pressurising me to return Elizabeth back to the care but this was against her wishes – why should she return only to be sectioned by the team and all the team cared about was her compliance to the drugs yet there was no problem in this respect. Elizabeth was becoming weakened by the deprival of this powerful drug but it was pointless me driving hundreds of miles to collect it when I had already been refused. On coming back from Harley Street where I had failed to get the drug, I telephoned lots of different firms of solicitors to obtain assistance for myself in this matter. One major firm of solicitors had spoken to Elizabeth and the next thing I knew they were appointed by her but I still continued to look for representation myself, making phone call after phone call as the matter was now urgent but no one could help me immediately.
Wednesday, 14th May 2014: – fourth day without the drug.
First thing in the morning the social worker contacted me wanting to come round to see Elizabeth together with a Consultant Psychiatrist. Perhaps the threat of being taken to Court by me was enough for them to act.
That morning I had made a further attempt to get the drug from the local Lloyds chemist. The Pharmacist was constantly on the phone. He had no doubt been speaking to members of the team and the outcome was he said he was could not help me.
When I advised Elizabeth that the social worker would be coming at midday she said that she did not wish to see them as she was not feeling well. She was by now experiencing withdrawal symptoms and described the effects to me. She just wanted to sleep and I had to really persuade her to come downstairs, explaining the importance of their visit. The social worker arrived mid-day with the Consultant Psychiatrist and I was immediately asked to leave the room so Elizabeth would be alone with them. I believed they wanted me out so they could do a capacity assessment but I refused as I did not feel this was fair on Elizabeth who was not feeling well having been deprived of the drugs for several days. The capacity assessment did not therefore go ahead. The consultant psychiatrist was left to explain about the titration process and how this would involve members of the Home Treatment Team coming to my home twice daily to monitor her.
That evening was the start of many visits by the Home Treatment team. They would come mainly in twos, would check her blood pressure and administer the drug. This meant that Elizabeth and carers had to be at home practically all day which was very restricting for her. Sometimes they would arrive at midday and again at 6.00 pm. It was because of this that I eventually requested that visits be reduced to once daily. Bearing in mind I work in a full-time job, I had to rely on many close friends for help and support. They would come and spend all day with her. A close friend reported back to me that she had overheard a nurse saying “it won’t be long before you go back to the care home and that her social worker was coming to get her”. It was obvious they were trying to get her back. Questioning by some members of the team was becoming more and more intrusive. It was as though they were recording everything. So, having agreed to once daily visits, the team then tried to take away the supply of drugs to resume twice daily visits which we had to complain about. Several letters from social services addressed to Elizabeth were either posted through the letter box or handed to her via the Home Treatment Team who seemed to be used as messenger service. On one occasion, whilst I was at work, a social worker came to the house with another member of the team and they attempted a capacity assessment in front of my carers but Elizabeth did not wish to co-operate. Elizabeth had given her carers notes by way of written proof that she wished to be at home but this was not enough for the team. Suddenly we received Court papers that we were being taken to Court of Protection. They wanted to sever contact/deprive liberty and section her (according to the files I have now acquired). Elizabeth Suffers from Agoraphobia not having been out much in three years and despite this being a crowded environment she handled it very well. Elizabeth also had a fear of heights and we had to go up to the fifth floor of the court by lift. I had to arrange private therapy for her to be able to attend court. Whilst Elizabeth had obtained representation I had none, due to the cost for which I was quoted around £900 per month. I was not entitled to legal aid. Following Court, months later we were still waiting for the outcome of the court Hearing but there was no news so in the presence of Elizabeth, I telephoned her solicitors to find out when the next Hearing would be. We were then told that it was unlikely matters would be going any further and that the only thing left to settle was the solicitor’s expenses. There was no mention of anything to Elizabeth, not even her fares have been reimbursed. If the Council had been successful in the Court, they would have destroyed my family and affected everyone therein. Elizabeth and her sister were terrified of the prospect of their intentions becoming reality and did not wish to answer the door on one occasion. Elizabeth has seen the files which portray the family in a very nasty manner. Elizabeth has not wanted to see the team since reading these files and who can blame her. My carers feel the same way, especially in light of serious allegations which I cannot mention at this stage.
Titration of Clozapine is very risky and I can see from the files that Elizabeth suffered high pulse rates which “was of some concern” They titrated her back up to the 350mg she was previously on and requests from both Elizabeth and myself to reduce the drug was ignored by all three psychiatrists involved. The team ignored chose to ignore the fact that Elizabeth was suffering with what appeared to be signs of Tardive Dyskinesia. When walking she would make jerky movements with her arm and she constantly complained of dizziness.
When Elizabeth told the Home Treatment team she no longer visits they ignored her and continued phoning and visiting regularly. It was noticeable that some team members had name badges back to front.
Both Elizabeth and I requested the medical files which we eventually received, the contents of which are shocking. No wonder they did not want me to see them. Apparently we were regarded as a “special case” and that the Home Treatment team ordered to go in twos and report everything back.
Words such as “aggressive” and “hostile/angry” are frequently mentioned which is totally untrue. There were even worse insults towards me. For instance certain members of the team tried to arrange a MHA assessment on me using my GP. It is not nice when the team pick on the appearance of my daughter and make awful comments. Everything stated in the files was a means of discrediting me, in particular, the family and home. I even called the Police due to the harassment we received. The Police visited and commented that I had a nice home but that there was nothing they could do.
A new social worker has now been appointed. To this day, we do not even know the name of the new Psychiatrist. The transfer of care has not gone ahead as Elizabeth did not want to attend a prior meeting with the social worker and a nurse. She was denied the chance to see just the consultant psychiatrist. None of my carers wish to serious allegations on which files are missing.
It has been a year now since Elizabeth came home. She continues. We have no support but she continues to do well. Elizabeth has a personal trainer that comes to the house twice a week which I pay for. This is helping regain her confidence but she still will not go out anywhere alone and suffers panic attacks. It will take her a long time to recover and she is now disabled in this respect although in the home she can manage well herself. Elizabeth has recently done a jewellery course which she enjoyed and at the weekends I do my best to take her out as much as possible. I have taken her to my conferences/courses and meetings with former patients who have acted as peer support. It is good for Elizabeth to see that there are some wonderful professionals who wish to see changes as at the ISPS and INTAR conferences. The support we have had is from close friends and from the former patients themselves. Elizabeth is free go out as she wishes but sadly is a prisoner of her mind, too afraid to venture out anywhere alone due to the agoraphobia and feeling dizzy whilst out walking.
I have taken Elizabeth out with me in huge crowds but I notice there are good days and bad. She is improving as when she first came she felt physically ill and sometimes refused to go out. “Schizophrenia treatment resistant” is just one of several diagnoses given to Elizabeth. The team choose to ignore two others such as Aspergers and PTSD. I would like Elizabeth referred to experts in the field of Aspergers and PTSD but this has not been done. Right now “Schizophrenia” is being questioned by leading experts as being a “valid” diagnosis and “treatment resistant” means “poor or non-metaboliser. I have therefore turned to leading experts in Rotterdam who have agreed to carry out metabolism tests as we have seen adverse reactions more than once. (results since then are poor/non metaboliser of psychiatric drugs) Also, no one cares about Elizabeth’s declining physical health and wish to keep her on drugs for the rest of her life so having these tests done should lead to a lower dosage or complete review. I have asked for a referral from the GP but do not know if this will be possible as yet and I have been told I may have to pay.
Elizabeth has been on maximum amounts of concomitantly prescribed drugs which have led not only to adverse drug reactions which can easily be mistaken for “symptoms” of so called illness but more and more different labels were given. I think it is important for more accurate assessments to be given before putting someone on anti-psychotics in order to see if someone has any underlying physical conditions and whether they can metabolize the drugs. Endocrinologist appointments should be given as a matter of course – there could be other reasons why someone suffers from psychosis. I would obviously like my daughter on the very least amount of drugs as do all the other parents who have sons/daughters’ stuck in the system on never ending prison sentences. Such patients can be sent to secure units and locked away when they have not committed serious crimes and “sentences” can last for years on end causing disablement and some never get out of the system as they are too weak to challenge things or even pick up the phone to speak to solicitor. Solicitors do not go near such patients and represent them properly so I have seen. I think this is terrible and an abuse of human rights to drug someone for life ignoring underlying physical conditions. The only way such people are incarcerated for life is down to convenience as they could not cope in the community and even in care homes patients are drugged enormously and no one is properly looking into this fact. I believe no one should be written off and Elizabeth is proof that home is the best environment but patients are sent to care establishments in order to control them and this is done by giving them huge quantities of drugs – just continuing what kind of “care” you would encounter on an acute ward where a patient admitted who is disturbed will first and foremost be drugged and where restraint and other forms of “treatment” such as ECT are commonplace. Drugs are raised to maximum levels and prescribed concomitantly on a trial and error basis. Patients can end up becoming inured through wrong treatment and this is why it is important that accurate tests are carried out prior to prescribing the drugs.
I believe the answer to the current situation is Open Dialogue. Open Dialogue is supposed to be available for everyone now but that is not the case as you are excluded if you are in hospital – regarded as an acute case or already have a MH team involved. It is run through North East London NHS Trust called “Dialogue First”. Care is not working and this can be seen with overflowing wards. Parents/carers are often excluded and if you dare to complain you can get bullied by restricting contact or even attempts to sever contact altogether. I believe that P450 liver enzyme tests should be given to patients first before prescribing in order to determine the accuracy of treatment. This could save money to the NHS and benefit the patient and I believe that drugs should only be prescribed at minimal doses.
There is no choice in care and an acute ward is not therapeutic and can be noisy and frightening to some. I believe that there needs to be choice available in facilities, some offering specialist care for PTSD but not in prison-like institutions like some of these hospitals are all about. To avoid patients going to acute wards they should only be used as last resort then there needs to be something like Healing Homes or Care Farms. I would also like to see an end to forced treatment of restraint/injections and ECT which I think is barbaric and there should be more therapeutic treatment on offer. Advanced Declarations are ignored which is very wrong. I believe that peer support is so important and that if Open Dialogue were adopted then former patients themselves, where possible, should be included. There are cases where a patient can avoid hospital admission and only former patients could really understand what they are going through. There are many who wish to be involved and help others but former patients are often ignored the same as carers are. I feel that in some cases there are families who really do care and want their sons and daughters released from never ending sections. I believe that it would be cheaper to increase carers allowance to such families and give direct payments and with the open dialogue approach this could see an end to the current situation of overflowing wards and patients being drugged forever.
I would also like to mention that vast sums of money as much as £12500 per week is being spent on private sector hospitals owned by multi billion dollar corporations and the Elizabeth has not benefit from any of this private all for profit treatment. For that money you would expect proper assessments to be given and there not to be shortages of staff leading to patients not being allowed out. Such places are little more than prison and they are just drugging vulnerable people and holding on to them for years trying to make as much profit as they can. All this is being paid for by the taxpayer whilst NHS wards and other services are deprived of funds.