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.