Yesterday I decided to phone the care home as I have noticed they are giving what seems to be a lot of extra drugs on top of the 350mg of Clozapine which I am told is too high and should be 100mg for a therapeutic dose. I have already complained about what I see as over-medication and showed my concern for Elizabeth’s well being. The care home responded that they would be having a meeting to discuss all of this but then I heard nothing and not once have I ever been invited to any of the meetings or the rest of the family come to that. When I was told by a new member of staff that the drugs were nothing to do with them and were being prescribed by her GP I then telephoned the GP. “you are no longer the next of kin” I was then told. I was shocked by their response – all I wanted was the team to have a meeting that included the family to discuss about my daughter being on minimal drugs. I could not get hold of the Manager and he had not returned my calls hence my last strongly written blog called “communication”. I think communication is very important and I have found that very lacking with the team as they do not include you. Well I was not outspoken to begin with – I have never felt that the drugs were the answer and Elizabeth should never have been put on so many. These drugs have done nothing for her and my concern is for her physical health well being. I have not been impressed by the GP’s strict 10 minute only policy. I did not come across that with the previous GP in Wales – Elizabeth did not know who her GP was and I was very concerned about the prescription of 500mg of Metformin a day – knowing this was contra indicated to Clozapine and I queried this and Elizabeth was with me at the GP surgery in Wales and gave me permission in front of staff in that I could help – after all Elizabeth was not allowed out on her own and would not have been able to pick up the phone and dial the GP let alone her solicitor who never came near her and who called my solicitor a “dick head” – this solicitor was recommended to my daughter by Cambian who approached her and said “it would be better if you have a local firm as you are in Wales now” – these were the kind of words used and the solicitor never wrote back to my solicitor and this just ended up dragging the procedures of the Tribunal out making it lengthy. When someone is highly sedated on drugs it weakens them and they do not have the strength to pick up the phone and deal with issues like this – that is why so many end up institutionalised not because they are a risk to the public or risk to themselves but simply because they cannot face having to go through a tribunal or dealing with even phone calls for instance. It does not help either in the case of some patients who have had their phones taken away and discouragement in contacting their families – ie coercion.
Getting back to the care home – I saw three packages of drugs marked “morning” – “lunch time” and “Tea time” – it was the lunch time drugs I was questioning – these drugs were marked for “aggression/agitation”. Well Elizabeth is not aggressive – she is on Clozapine last resort drug. Elizabeth does suffer from anxiety but there has been no need to take these extra drugs whilst she has been at home. Elizabeth has not suffered from anxiety as I have not been pressuring her to go to places where there are crowds, I have not been pressuring Elizabeth at all and she has had no need whatsoever for these extra drugs. It was the extra drugs I have been complaining about and my worries for her physical health that I have accused the team of not caring about because all they have been doing is continuing the current drugging regime and what is more is that under this care home there would never be any review. Elizabeth is young compared to most of the people in the care home – there is 1 other person – male who is around the same age but hardly ever there. Inside the care home it is spotlessly clean and the staff come across friendly – any inspector would give them full marks for an inspection and of course Elizabeth has been used to towing the line – ie when you are surrounded by staff you end up going along with things. She has been complying with the drugs and knows this has to and she has not given the staff any problems. I have also not up until now had any problems with the staff there and have even written a glowing report about them and how pleased I was with the services that was up until now. Referring to the extra drugs I asked Elizabeth was she given these every day and got the impression they were dished out frequently – the Manager had previously told me that they were given as and when Elizabeth needed them and of course I am against unnecessary extra drugs but I got the impression they were given more frequently and regularly and I am concerned about this. For instance Elizabeth mentioned one member of staff there who I do not wish to name on my blog. This member of staff said words to the effect “these drugs have been prescribed as when you came back last time from home you did not look too good and that the drugs were needed” – ………….words to this effect – this made me think back to Cambian where nursing staff tried to discredit me for missing 1 metformin tablet when it was not just me who had her but the rest of the family and also they commented along the same lines that Elizabeth came back to them looking stressed out. I think this is go bad – the truth is that Elizabeth has not need one of the extra drugs. She has not been denied them by me but has not asked for them. The truth is that Elizabeth has been no trouble at home, I have not even had to remind her to take the drugs. I see Elizabeth has started smoking since going to the care home – in the garden it is very pretty but this is like a smoking area. Whilst under Cambian she had stopped smoking. I heard she had been taken swimming – the OT at the care home had taken notice as I mentioned that if they had a swimming group this may be good for Elizabeth and that I would pay for any extras.
Anyway, I had a friend who came to visit me yesterday who has been through a lot – the friend like all of my friends is not someone who would give Elizabeth bad advice – in fact this friend could not have given better advice and how this person stayed away from drink/drugs – did not copy others and looked to keeping healthy and getting on with her life. It is good for Elizabeth to hear how someone has recovered and getting on with their lives.
The care home have a nice lounge with TV and a communal kitchen – Elizabeth has a nice bedroom there. The location is urban not countryside so there are shops and good facilities and bus routes nearby however not once has Elizabeth ventured out. After 3 years in hospital someone can become dependant and completely lose confidence. The people/residents under the care home seem nice however that is not the issue here. When the manager does not return your calls, when no one in the team wants to work with you and excludes you, when extra drugs are given despite you bringing to the attention that the level of drugs is too high. That is where they should be holding a meeting to discuss about doing what they can with Elizabeth’s physical health. When I phoned the GP surgery they did not want to deal with me – the GP was out. When I phoned the care home they referred me to the GP and said if it was a complaint about the drugs it was nothing to do with them but I should contact the GP. Anyway a firm of solicitors telephoned the care home and told me that the manager did not seem helpful and forthcoming with information. Finally he managed to find out that it was in fact all pointing in the direction yet again of social services. Apparently instead of holding meetings about my concerns as to the wellbeing of my daughter on all these extra drugs it would appear that discussions are on-going about getting rid of me again as the nearest relative. All this has been going on behind my back by the local social services team and I am not the only one being bullied by social services. The team is the same that have been around from virtually the start of Elizabeth’s care. The reason they do not like me is that I have had good cause to complain. I have complained about serious incidents not only under hospital care but care in the community and once you complain then they do not like you. If they had been helpful from the start and done what they could to assist I would have had no complaints but there is no openness or honesty with these people and whilst I was being open and honest with them, social services were being the opposite.
Anyway I have sought advice as Elizabeth who wanted to come home in the first instance was denied this by social services. Social services pointed at the fact they did not want her to come home but they have no grounds to accuse me – members of the team have tried to accuse me in the past of encouraging Elizabeth/influencing her to stop taking the drugs and this is untrue. It was always Elizabeth who had complained of the side effects who wanted to come off them but I am not qualified to do things properly and nothing has been done properly as regards a withdrawal before resulting in failure and then Elizabeth has been told that she has to take the drugs for the rest of her life.
I have been challenging the diagnosis and this is another reason the team do not like me. The social services have dismissed a full report by the independent doctor and trivualised the contents therein. Elizabeth had been denied sight of this report which recommends a very different treatment to what she is getting – intensive trauma therapy” and it does not recommend Clozapine and this drug is not recommended for PTSD as I have looked up NICE Guidelines so again I have had cause to complain as they have not only excluded myself but they have treated Elizabeth like she is nothing by not being honest and open and giving her a copy of the report with new diagnosis. All of this led me to seek further Professional advice at top expert level and from people who know better than most GPs and psychiatrists as to how these drugs work – how to safely withdraw someone and this has led me to question the knowledge of the medical profession in general when no one had heard of P450 Cytrochome tests and I then tried to find out where could I get such tests done as it is so important – if my daughter cannot metabolize the drugs then she should not be on them as this could be harming her physical health. I believe these important tests should be readily available and I know of a university where there is a programme of these tests going on so I tried to get Elizabeth on this programme but the Professor concerned is out of the country. The GP had not heard of such tests and the consultant psychiatrist does not want to speak to me so this is not a good situation where you have to pass messages through the care home manager to the consultant psychiatrist and then the care home manager has written to say that I should communicate directly with him however I am now thinking that in all this time there must have been meetings going on, perhaps the centre of the meeting is their discussion on how to replace me yet again with her father. I have accused social services of causing a rift in the family, putting my younger daughter in a position between myself and her father who lives a distance away and is working full time as I am now. Anyway I wish to share the following about Nearest Relatives:
“Husbands and wives are equally on the hierarchy of NR’s where offspring are concerned, both in the highest category (a) of section 26 MHA 1983. Notwithstanding the general rule that persons higher up the list take precedence (not applicable here) where a patient ordinarily resides with, or is cared for by a relative before admission to hospital that relative is the nearest relative of the patient. The legal authority is Re D (Mental patient: habeas corpus) (2000) 2 FLR 848. He therefore can only be NR if he is involved in direct care and if he was so at the time of her admission. They will of course try to invoke the test of unreasonableness on your part. If your ex-husband is ‘appointed’ by the treatment team by operation of S26 MHA you can object on the grounds that he is not in the best position to act on your daughter’s behalf.”
This is all a terrible waste of public money – to apply to court, to have to allocate more solicitors – what a waste of public funds. If I as a mother was going to take her off the drugs and do this myself fair enough but that is not the case I am not qualified and know Elizabeth cannot just come off them. Whilst I thought a country environment – farm with animals was a better environment but Elizabeth has not been sent there and I thought a therapeutic community would be more natural.
I am now looking at the local paper and on the front page is featured “Mental Health Patients Being Placed in B&Bs.” – one of the reasons I thought it would be better for Elizabeth to get away from the local area was because the care had failed and serious incidents had occurred however to my disappointment I discovered there was even more shocking care elsewhere but I will now feature some of this article about the local area:
“Hundreds of patients being discharged into bed and breakfast accommodation to free up mental health services each year as a result of toxic combination of spending cuts and increasing demand. There is a figure of £264,000 on discharging patients into B&Bs for 36 days on average spent over 2012/13. The trust has spent 11 times more on placing patients with private providers compared to 2 years ago. The budget increased from £89,000 in 2012 to just under £1,000,000 during the first ten months of 2013/14 with an average between £440 and £530 a night spent on securing a single bed usually with private health firms The Priory or Cygnet. So now the massive increase in use of external beds has resulted in the Trust having to cut the number of inpatient services by a third over the past 5 years whilst demand has increased. One councillor who I do not wish to name in this blog states that he is disappointed to see the trust being forced to spend over £1m with private providers who are making a profit from the NHS. He quite rightly goes on to say that the money should go into front line patient care and that it doesn’t make economic sense. He urges the Government to immediately look into the funding and deliver the promise they made that someone with mental health problems gets the same level of care and support as someone with a physical illness (HOWEVER I WOULD GO ONE STEP FURTHER THAN THIS – PERHAPS THE MH PATIENT HAS A PHYSICAL ILLNESS THAT HAS NEVER BEEN FULLY INVESTIGATED AND PERHAPS THEY SHOULD HAVE BEEN REFERRED TO AN ENDOCRINOLIGST AND HAD THE LATEST TESTS DONE AND MOST ACCURATE ONES WHICH UNFORTUNATELY I DISCOVERED ARE NOT AVAILABLE IN THE UK AND AM FINDING OUT ABOUT THIS).
In their defense the Trust said B&Bs were only used for patients who had been clinically assessed as ready for discharge – however I would point out there were times that Elizabeth was discharged and she was in no way well enough to be discharged and just dumped into her scheme into the community without any extra support.
The spokesman said that significant pressures on services recently has been seen – no wonder why if the care is all about enforced drugging without looking at someone’s physical care – no wonder why the care in general is not working for everyone when patients are not given consideration and are told they face a lifetime of drugging – this is abuse in my opinion and allowed by law to go on in a so called civilised country. The try and say they attempt to locate a bed with another NHS provider firstly before looking at the independent sector and that B&Bs were only temporary. Well the CQC have given them a warning when they found seclusion rooms being used as bedroom but the mental health trust now says that this is no longer being done.
Well before all this became headline local news I could see the scenario of revolving door with Elizabeth being admitted time and time again and seeing the same faces back on the wards.
On a ward the main care is drugs and with money being wasted not just on this but drugs to patients who may not even be able to metabolize them as there is no national testing programme in the UK – this denies lifesaving drugs to those who do need them for physical conditions as they are too expensive. Money is being wasted on pushing drugs to my daughter and Clozapine is not a cheap drug and could lead to long term serious health problems if she is left on them for the rest of her life like the team see fit. Plus all the extra drugs being given to Elizabeth right now on top – what is this all doing to her physical health when she was a trauma victim. As with many people under the MH they are victims of trauma and the drugs do not work for everyone but there is no choice and staff can be brutal by forcing a patient to have an injection rather than take the drugs. One of the members of SOAP group Jean Cozens is a shining example here of someone who due to enforced drugging and level of drugs to the point she could no longer enjoy life ending with her taking her own life – members of the group recently attended the Inquest. So giving drugs to a treatment resistant patient is a waste of money and also much money is being wasted by social services by taking people like me to court and displacing nearest relatives. Just think about it the solicitors are appointed by the council – the patient has a solicitor and the nearest relative has a solicitor and things can drag on and on and on depending on whether a patient is supported properly by his/her solicitor – a good solicitor would make a point of visiting the patient and instead of waiting for someone to telephone them especially when someone is vulnerable like Elizabeth.
Anyway to think this is going on for a third time whilst the team desperately try and replace me again when they could point the finger at me accusing me of being a danger to the patient – however by the way Elizabeth is not on a section any more – she is also not on a CTO so therefore she is free to do as she wants. Her first wish was to come home but social services said no to this however they did not seem to mind her going to her fathers home – they cannot deny her leave as there is no grounds to do this. I am not a risk to Elizabeth – she does not return to them in a stressed out state – I would accuse the team of once again sticking together using tactics that amount to coercion. When things are in such a mess locally the team should be looking at ways in which to save money not waste money. Now they are all in discussions so I heard – these discussions are no doubt centred on myself rather than concerns to do with.
Anyway, at the end of the day I finally got a call from the manager of the care home but did not realise he had left a message. I have not spoken to him yet but spent over an hour trying to get through to emergency social services. I have to praise the person who took the call and how she dealt with me – I wanted to speak to someone there as Elizabeth has expressed her desire to come home. It is no good if a team are questioning Elizabeth to choose between mother and father who by the way are on good terms and cause trouble in the family – this is what has been going on since the Bethlem and Cambian and now the care home – unbelievable! What a nurse should be asking a patient is “how are you” – “are you OK” “is there any problems with the drugs” “is there any problems in general” – instead the nurse is asking Elizabeth if she would prefer her father to be the nearest relative which puts pressure on her and causes upset – if this is what this team are doing then it is not doing her physical health any good to go back there and if it is Elizabeth’s wish to come home and she is of no risk to herself and others then this should not be a problem and would save money to the local council who are wasting a fortune by the looks of this front page article.
Yesterday I contacted the CQC – they virtually told me there was nothing they could do apart from look at the records to see if they were being kept OK – well what good is this! there is far more to looking at the records and the CQC also do not investigate individual complaints even if they are serious and even if you point out there is more than one patient complaining of human rights. Still the CQC do nothing whatsoever.
I was then advised to complain about social services by the CQC as though this was mainly their responsibility when I am in fact complaining of the extra drugging in the main. So I was not impressed by this but not surprised at all.
I then wasted an hour trying to get through to the emergency social services to tell them what had happened and that I was most concerned as to what was going on and Elizabeth’s well being not only that she expressed her desire to be at home again. Well I could not get through to them. I will try again today.
Now suddenly this care home manager has left me a message and I have not got back to him as yet. There is suddenly a new person working there who told me to complain to social services – for all I know he could be part of social services keeping an eye on things but I am just assuming – I responded that I was not on good terms with social services that they had tried twice to replace me as the nearest relative and that I had nothing to say to this team – they should be the ones to get in touch with me and communicate but do not bother. Even if you do not like someone you are paid out of public funds to communicate – one of the reasons I so wanted to go into the Police Force was to communicate and work with those with mental health conditions as I was shocked at how I saw them being treated by professionals and I am not saying that all professionals are bad.
So now I have quite a dilemma – I know that if I do not return Elizabeth to the care home social services will spring into action and I will get court papers sent to me by email like last in front of all my work colleagues. On the other hand now that Elizabeth has mentioned a name of a member of staff who I would accuse of coercion I would be concerned for Elizabeth’s wellbeing if she was returned to the care home even if this manager gave me all the assurances in the world.
There is also the issue of the drugs which will have run out by Sunday – the day I am supposed to take Elizabeth back.
I would like to share this with everyone to show what is going on in reality behind the scenes and this is money being wasted simply because the team do not like me. People may think well she has herself to blame by her blog for instance I have been accused “she is not helping herself” – there you can see that these words were said not to me but to my daughter. “do you really want your mother to be the nearest relative” said the consultant psychiatrist at Cambian who left by the way and I found out that this consultant psychiatrist is also a GP so someone told me. I did not have a blog in the first instance and this has come about as a result of my despair by what I have seen. I find I am not alone in this despair and my reason for making this so open and honest is because I feel this is the way forward. Forget anti-stigma campaigns if things were brought out in the open then there would be no stigma – it is secrecy and sensational press reporting and ignorance that cause stigma. Anyway these campaigns are not doing anything to ease the overwhelming failure of the care system for MH patients and inhumane treatment of patient allowed to go on under the law. These are human beings at the end of the day and can respond if they are treated well in a positive manner. I am impressed by the intelligence of the former patients I meet up with and like I say many have been abuse victims themselves and getting back to the Metabolism Programme – if these tests were on offer then it could be the best solution of all as if this is ignored and patients continually drugged concomitantly with say contra indicated drugs for instance not only will their physical health decline but the adverse reactions in terms of behaviour could be the very cause of interactions from drugs that a patient is routinely given and kept on – that is why the system is not working and much money could be saved to the NHS rather than wasted on drugs that do not work for a MH patient who is ignored by the team as Elizabeth is.
Well I am not criticising all consultant psychiatrists as there are good ones to be found on the website of CEP (Council for Evidence Based Psychiatry) Also there was one good social worker at the Bethlem Royal Hospital and the social workers for my father who had Alzheimers were brilliant so as you can see I have come across good members of staff plus the junior nursing staff at the Bethlem and a couple of nurses who escorted Elizabeth to visit me before Xmas when the consultant psychiatrist denied leave over the Xmas period to the entire family.
Anyway I will make a further attempt to contact social services emergency out of hours today and the care home unless the out of hours social services themselves wish to contact them. I would otherwise have taken Elizabeth back on the Sunday but now the situation has changed when I feel that this culd cause her stress and health problems if she is being questioned by her nurse about replacement of me as Nearest Relative yet again and that the risk is too great for Elizabeth – what is more, she expressed her wish to come in front of friends but was also very worried that there could be trouble for me and a vulnerable patient like Elizabeth should not be put under such pressure by a team who simply want to get rid of the nearest relative when there is no reason for this – I am the only one who is caring for her physical health by the looks of it whilst the team are pursuing their wishes to see me displaced with her father. I would conclude that this is a very nasty situation by people who are meant to help and assist not drag parents to court when there is no risk. It is a good thing that I am bringing this out in the open as I know of others affected.