Today I telephoned the GP as we as a family have been worried about Elizabeth’s physical health and Elizabeth has given me consent to deal with the GP which will be passed on to the new GP as Elizabeth was with me when she openly gave her consent. I think Elizabeth knows that I am the one who cares about her physical health. I am the one who has read a report by a consultant psychiatrist who I truly respect who has had many years of experience. For once the diagnosis sounded right to the entire family who know the full background of Elizabeth and everything that has happened to her including the serious incidents that have been covered up. The new diagnosis is PTSD and I as a mother and nearest relative am appalled by a team who have not given a copy of this report to Elizabeth when she has a right to know what is in it including the fact that the current treatment is NOT recommended. So the team have knowingly been giving CONTRA INDICATED drugs until I as a mother pointed out how wrong this was. Immediately 500mg of Metformine was taken off the prescription and I have been patiently waiting for the news – we as a family need to know if Elizabeth has diabetes. If Elizabeth has this then she would need a special diet. So today I telephoned the GP to find out – apparently Elizabeth was due for an appointment yesterday to have a blood test and did not turn up. So the next thing I did was to telephone the private sector hospital where Elizabeth has been for over 2 years now. I first of all spoke to the Manager and she said she would pass on the message to the new consultant psychiatrist. For the first time I spoke to this new consultant psychiatrist yesterday and he sounded OK however he disagreed that the therapeutic dosage of Clozapine should in fact be 100mg and Elizabeth is on 350 mg – I have sought top level advice regarding this and contacted NICE. I have received an automated reply so far and am waiting to hear from them. Surely the minimal of drugs should be given but it would appear that no one could care less about physical health and it is a good job that I am looking at this very carefully and I would advise all mothers to do the same and to check what is going on when there is more than one team involved as quite often there is not a good level of communication. I am not blaming the GP but in fact the hospital should have provided every little bit of detail as to the real reason why Elizabeth is on Metformine. I am assuming at this stage that something has shown up on tests and in fact now want further tests done as I have been reading about the research called Selyes Generalised Adaptational Syndrome – now I want every test done necessary including the P450 liver enzyme test. I am more than happy to pay for these tests to be done privately but my point is that these tests should be readily available and if there is any problem then the family should be told.
So, Elizabeth did not turn up for the appointment and that is because she was not taken and when I asked why she was not taken for this appointment I was told by the consultant psychiatrist that Elizabeth had eaten first and therefore these tests could not be carried out at and the tests happen to be crucial as even the GP is querying why Elizabeth is on Metformine. Anyway I told the consultant psychiatrist that we as a family wanted to know the result as we needed to have this information in case Elizabeth had diabetes and needed a special diet. I asked that the consultant psychiatrist re-arrange the appointment with the GP and I believe this has been re-arranged for tomorrow. You can be sure that I am going to check on this and ring the GP. An excuse was made by the consultant psychiatrist that they could not keep an eye on her as regards her eating something first – that to me is no excuse whatsoever and is making me all the more determined to find out what is really going on. It was during this conversation which took place right at the end of the day that the consultant psychiatrist announced Elizabeth would be moving. She would be moving by the end of the month. Originally Elizabeth was told it could take a month and I thought she would be eased in gradually and allowed to stay for a bit longer but now all of a sudden the team want her out of this private sector hospital and away from Wales. I as a mother really liked Wales – the area itself is beautiful and it is peaceful but now Elizabeth is going somewhere else – I cannot say where but she is going to a care home. Elizabeth liked the placement but my objection is the way everything has been done. The care home was what was earmarked from the start and the family wanted her to go to a farm-like environment – she was taken to see one such place but did not like it but when asked said she did not meet any other residents and she was not allowed to stay. Then I was told in writing by her social worker that I should approach the other placement which was Elizabeth’s favourite and arrange it myself. I have previously documented what happened and I was told that social services had arranged the placement already at the care home and that it would be inappropriate for Elizabeth to even go and stay – talk about control and social services even think they know best about the drug Clozapine – what knowledge do social services know about the workings of the drugs and what is best in terms of medication for my daughter. Why haven’t social services or anyone from the team come to that told my daughter about the report stating there is a new diagnosis. My daughter was recommended a solicitor from the hospital and when I asked Elizabeth if this solicitor has visited the answer was no. It is not surprising when I have been told that MH law can easily be usurped and I think that this is all the more reason that the law is revised because the weakest and most vulnerable people are NOT being fairly represented. What gives a team the right to treat a family like they are invisible – I suppose the power goes to their heads and they forget they are funded by taxpayers and I am one of them and they think they are greater than God. I call it bullying in the form of exclusion and bullying in the form of harassment when they want you to agree to a section 3 and then this section is dragged out for a lengthy time. In fact under the private sector hospital EVERYONE IS SECTIONED and I have heard these sections go on for as long as 3 years. How much money is that I wonder? I would like to know how much the other placements are as opposed to the one that social services chose. If Elizabeth had chosen herself without any influence and had been allowed the chance to stay at the other placement I would have felt happier.
One of the conditions of Elizabeth’s release is that I do not interfere with the drugging. I have sought top level advice. – I have a right to know if my daughter has diabetes for a start or any underlying physical health problem and so does Elizabeth who has not been treated fairly at all. Also I have a right to seek another appointment and pay for whatever private tests are necessary. For instance it has been recommended that Elizabeth sees an endocrinologist and if Elizabeth is not metabolizing the drugs then the drugs could be doing more harm than good.
What kind of profession ignores physical health for the reason of convenience. Well I am not the kind of person to take the easy way out of anything – if something is wrong I will seek to put it right and a team should have the utmost concern in relation to Elizabeth’s physical health.
It should not be ignored that more than one expert has advised me and if it has been covered up that my daughter has got a serious medical condition AS A DIRECT RESULT OF THE DRUGS GIVEN. then the team should have the decency to advise the family.
Like I have previously said Elizabeth would need 24 hour care now. Physically she has declined to the point the rest of the family are concerned. A young person like Elizabeth should be out enjoying herself but she is exhausted – the drugs are highly sedatory and should never have been given to Elizabeth in the first place as it was against her wishes and she signed an advanced declaration.
I am not alone as others have written to me to tell me how they have been threatened with displacement as regards Nearest Relative.
People are becoming more outspoken about what is going on not just in the UK but in all so called civilised countries. There is a lot of money to be made out of someone like my daughter and the appalling thing is that no-one cares.
Very soon I shall be meeting with the mothers/parents on 4th March to discuss the business plan of Chy Sawel – if only this was set up and unlike the team I respect and wish for patient input and involvement with my daughter’s care. It is not about qualifications it is about the way someone treats another human being. It is about listening and I will leave you with my daughter’s comments “WHY WONT THEY LISTEN, MUM?”