Elizabeth has spent an hour at the local gym. I dropped her off and left her – it is a small gym where there is almost one to one attention – she is 27 and an adult and I want her to be independent and have a normal life. I do not treat Elizabeth like a child. I am trying to encourage her get out places on her own and ultimately without me being present. I do not do everything for her either. If she was invited out with friends of her own age( provided they were not offering alcohol or drugs) – decent responsible young people I would be extremely happy after all Elizabeth has spent c.three years in a hospital environment and drugged to the point she has come out of this disabled but that does not mean she cannot do anything at all. Around the house she seems to have no trouble walking, cooking or doing normal things. It is getting out that she needs help with.
Turning now to the Home Treatment Team – they have left us alone for 2 days because Elizabeth said twice she no longer wanted visits from them. However today there was yet another call from someone called Kate who no-one had heard of when I phoned to enquire. I was told that there was no such person working within the Home Treatment. Anyway I have left the message on my answerphone with all the other messages for Elizabeth. Yesterday I invited the Police around to see Elizabeth – I am more than happy for the Police to be a witness to all of this as I understand there is nothing they can do about a situation where a team do not leave someone alone which amounts to harassment as she is not on a section or a CTO. She is fine and doing well at home.
When Elizabeth did not wish to return back to the care home the Home Treatment Team along with everyone else apart from the GP did not want to know and I was told to take her back but when someone is not happy why should they go back when they are not on a CTO or section. In the first instance Elizabeth wanted to come home but this was not agreed. The entire family are very happy now as they can see more of Elizabeth. Yesterday she visited her grandparents and spent time with her father. When someone is sent miles away from home it is more awkward to get to see that person and apparently there was a poor signal in her room which was why we could not get through. So, it is much better now and Elizabeth is not only looking better but is so happy to be at home.
When I asked for an explanation as to why the Home Treatment Team persisted in coming round to the house and phoning the answer I got was that they wanted to check to see if she is taking the drugs. I would hereby announce to all my wonderful supporters here on Twitter – “yes she is taking the chemicals” if she was not this would show up on the blood test in any case and they as a team were not concerned before about her not having the drugs as they denied them in the first instance and I was told I would not get them anywhere in the local area so I took Elizabeth to Harley Street.
Here is some of the wonderful advice I have received:
“do not whatever you do discontinue the drugs without medical supervision even if you believe you are seeing TD. Minor CNS disturbances are better than a rebound relapse and if you want to keep her out of hospital it is essential she is maintained on a drug until a more suitable treatment can be found. Well in the local area on the acute wards the treatment is mainly drugs but I am delighted to see that in some areas there is positive change – open dialogue being trialled and I hope this will be available everywhere soon.
After two months the team should allow Elizabeth to have a life like I as a mother am doing . Since coming home she has got on with everyone in the family and I have had loads of friends helping me whilst I am at work – the visits from the home treatment team were to re-titrate the Clozapine which they denied her in the first instance. The first people I rang were NHS England and the Home Treatment Team/Crisis Resolution Team and there was a crisis – Elizabeth did not wish to return, the drugs having run out for Sunday evening but I immediately tried to get more supply of them to no avail. Anyway I do not blame her and after she had spoken to the whole family everyone understood why Elizabeth did not wish to return.
So now the Home Treatment Team have done the retitration which was not necessary as it was LESS THAN 48 hrs being without the Clozapine – she was left to go down to nothing for several days and the Home treatment team have come over to my home for nearly two months. We have all noticed that the questioning by this team had become intrusive, not about the drugs or limited to how she felt but as though they were reporting every word. It is a much better arrangement now whereby I go to the hospital every Saturday morning to pick up the drugs.
Recently Elizabeth was been offered some more drugs on top of this Clozapine. I have been told they may be an anti muscarinic or anti-Parkinsons drug and that it would be much better if the drug was titrated down to an effective management dose ie the lowest that will work. It is an absurdity to give higher doses than are necessary and to counteract the side effects with other drugs. When you think that A&Es and maternity wards are being closed down not just in my local area but in many others – also cancer patients being deprived drugs for being too expensive there is an abundance of money being used on drugs that do not work for everyone under the mental health and in cases where patients are treatment resistant. More emphasis should be put on the patient’s long term physical health. I am currently arranging for her long term physical health to be looked at closely and the reason I took Elizabeth off that weekend from the care home was for private care and assessments as I was shocked at the high level of drugs being given at the care home and the fact that the consultant psychiatrist never once returned a phone call.
Even if someone is not affected themselves or their families it has a knock-on effect when so much money is being wasted under the mental health system with disregard for long term physical health.
Luckily I have managed to gain a lot of knowledge and advice from those consultant psychiatrists who are honest – yes there are a few but the vast majority have only one thing in mind and that is drugs and even worse ECT – this is barbaric in my opinion.
When certain members of the team who have no knowledge of medical care ie the drugs get involved, this complicates things especially where in some instances they completely control the care – this forced me to turn to Harley Street where there were an abundance of consultant psychiatrists who could see you immediately when you needed an appointment. At least this is all down on record that I as a mother did not deprive the drugs but made every effort as Elizabeth could have ended up seriously ill and now they want to continue to visit her and she does not want them to visit. I remember Elizabeth being under this team once before and they soon cut back on their visits and cut them out altogether but now it is a very different matter.
I am not clearing any of the messages from my answerphone – so a message was left from a woman called Kate this afternoon from Home Treatment Team at around 4pm for my daughter. I wanted Elizabeth to speak to her direct on the phone but when I phoned I was told there was no such person in the Home Treatment team by the name of Kate……………………………………………………………. Hold on! there is a knock at the door whilst I am writing this blog and Elizabeth has gone to answer the door. I am going to see if this is the mysterious Kate ………………………………………………. Sure enough there is a lady standing on my doorstep with her name badge back to front which I have seen many times before. Well when I asked to know her name she said Kate – I said Kate who? I said “can I see your name badge please” and went to turn it over and this was not liked one bit by this professional who objected so her name is Kate Coleman from the Home Treatment Team. No doubt Kate Coleman will go and report back and she could say anything – not everything written or done by this team have been nice as I have seen myself so far. If anyone is coming to my door and are standing on surrounding land I am entitled to know who they are – this woman could have been anyone! so it could be reported that I was unpleasant/threatening – anything they like …. as I wanted to see that name badge the right way round and this did not go down very well at all. She quickly left and did not look happy as she walked away. I told her that such visits were harassment in view of the fact that Elizabeth has said twice that she did not want such visits. Protection from Harassment Act 1997 could be used against such team members who persistently call and cause distress and harassment. How would Kate or any of the other team members like it if I was to turn up on their doorsteps wearing a name badge back to front and even though she was enquiring as to my daughter’s wellbeing not so long ago this team could not have cared less as my daughter was allowed to go down to nothing with the drug Clozapine for several days which I desperately attempted to get it. When a team is not offering or doing anything for my daughter’s care then they have no business to come round but in other circumstances such as if I for instance did not turn up to pick up the drugs on Saturday then they would have cause for concern or if I refused to take her for the blood test then the team should have cause to come round but not now as they are not doing anything to help and I am sure they have other cases that are far more urgent to deal with. Elizabeth’s wellbeing is in the hands of other doctors right now so there is no need for them to persist with such intrusive visits. They should respect and leave Elizabeth alone to get on with her life such as it is. I would rather have the Police round to my house any day – they are most welcome to come round and I invited them yesterday.
It is an intrusion and disregard for privacy and right to a family life. Elizabeth was getting fed up with the intrusive questioning and so were we all. I have read things written in past files about myself and the family which are not true and some of it is nasty. It is not nearly as bad for me as for the patients that some of these professionals deal with who have their liberty taken away from them. Well for the record I do not take any drugs and neither do I drink excessively – I am saddened by the current events – this shows how badly someone is treated under the mental health system. If they cared they would leave her alone to get on with her life – if they cared they would not have deprived her of the drug in the first place leaving her to go down to nothing when Elizabeth wanted to come home to live.
Tomorrow I am hoping to take Elizabeth somewhere extremely nice and I am so busy tidying up the house now that Elizabeth has moved into the bigger room.
Anyway I was delighted to see the police round to my house yesterday and wish for Elizabeth to see them in a different light – for instance they helped my younger daughter once and they helped my father with Alzheimers who kept going missing. So I myself do not have that bad an impression of the police because of the way they have dealt with certain people in my family. I have seen worse response by certain MH professionals themselves.
Elizabeth has been speaking more about her experience at the Bethlem and how some members of staff wore their name badges the wrong way round and I noticed this myself and lo and behold on my doorstep today a member of NHS staff with her name badge the wrong way round. This should not be allowed to go on.
Elizabeth is sitting here with me now and wishes to say not only that she wants me to start the BBQ but last of all that “I do not wish for any more visits from the Home Treatment team”
Today we went for a lovely drive out in the country not far away from where we live to a beautiful place that was peaceful and it was nice to get away from the local area and somewhere very pleasant.