As you all know from my previous blogs Elizabeth has been getting visits up until recently twice a day from the Home Treatment Team who come and give her the Clozapine. Elizabeth has been calm about the whole situation and has complied with the drug and retitration as she was left to go down to nothing. The main concern of this team is about her taking the drug now but when she first came back from the care home it was a very different story. The taking of this drug needs careful monitoring which I understand as Clozapine is a serious drug and one which Elizabeth did not want to go on in the first place – in fact she signed an Advanced Declaration to this effect but no one cared to listen. This was not worth the paper it was written on. Social services previously got involved in trying to push the drug Clozapine when she was on Quetiapine and I was most surprised as they are not medically qualified. Yes, she was having a bad reaction to the previous drug and kept being admitted into hospital going back now three years or so, however there is not even a proper national testing programme available in the UK and I believe this is the answer as some people cannot metabolize the drugs (Elizabeth is treatment resistant) and this in turn could save a lot of money to the NHS. I read a heartbreaking account of a young man denied cancer drugs that cost c£2000 week yet much money is being spent on private sector care miles from home when local care fails about this could be associated with the fact that in lots of cases drugs do not work and can cause adverse reactions in people like Elizabeth who are unable to metabolize them. Clozapine is an expensive drug as the “treatment” requires close monitoring but not on this scale now like they wish to reintroduce. When other people want care and attention this is being deprived yet Elizabeth is being watched like a hawk despite the fact she is doing so well in terms of how she is getting on with everyone at home and her behaviour. However I do not put this down to the Clozapine at all – she was clearly unhappy in the past. I do not think it is right or fair -she is not a child but a 27 year old adult and I as a mother treat her as an adult. She is encouraged to do her chores such as ironing etc. and she readily agrees to this. There has been no clashing between us whatsoever and that applies to the rest of the family and I believe this is because she has settled back into home and family and is happy now.
Tonight we have had a visit from two new members of the Home Treatment Team and a friend was looking after Elizabeth when I arrived home from work. The friend told me that they wanted to resume the two visits which were highly restrictive and I know it is not just a way of monitoring the drugs but to report back to social services but none of us can understand such measures when there are no problems. They sometimes used to arrive at my house at 12.00 pm and then again at 6 pm, meaning Elizabeth could not have a life as no set time could ever be guaranteed and we could not go out anywhere. Suddenly after 2 months despite the fact they could see she has been complying with the drugs and they started to leave the drugs in order that we as a family could ensure she took them in the mornings, leaving just one visit a day in the evening by them. We just cannot understand why all of a sudden they want to reintroduce this same restrictive regime of twice a day visits. Elizabeth is not happy with this at all and neither are we and we declined to give the drugs back as after all it had been previously agreed to leave them. All they should be concerned with is that she is taking them properly which she is and we are having no trouble with her at all. It is not nice for Elizabeth that a team should wish to destroy the time she has to go out with various friends during the day. It is not fair on her. Yesterday it took time to get through to the Home Treatment team and I asked if they could call later but no one got the message they came early and luckily Elizabeth was just approaching the house with a friend who was kindly looking after her that day who recognised the team outside my house. So messages are not read.
Elizabeth is 27 years old and has matured greatly. She does not need to be treated like this – she can cook and look after herself in the home. This is like punishment and I know that they are checking up on her knowing I work during the day all the time but never once do they ask how we are as a family – not once does anyone offer help and there is no help on offer via the carers centre either who I also telephoned today.
When I visited the Carers Centre I was told there was a month’s notice for Elizabeth to get someone like a companion to go out with via their scheme. She has had this before and it worked out well. However when I telephoned yesterday her name was not even down on the waiting list and I was told she would not be eligible for six months for this service.
The best thing that would benefit Elizabeth is some kind of help to go out to rebuild her confidence as much as possible as apparently she was very much restricted at Cambian, not being allowed out to the corner shop alone. I can see that I will be the one who has to provide this myself and I was thinking also about a personal trainer to come to the house so she has at least some activities to do during the day. At the care home she admitted she did not feel too well and had spent a lot of time worrying about the family being miles away and how everyone was. She did not get out a great deal there either but that she explained was because she did not feel too well. Everyone has noted the improvement in Elizabeth since being home. She is often out in the garden and yesterday was taken out shopping by a close friend and had a great time.
In the evenings I take her out for a walk in addition and we have walked a long distance recently as I have had trouble with my car. Always to start off with Elizabeth feels ill and makes excuses to go out and sometimes I have ordered a cab as it is so important that she is encouraged to go out. Once out she is fine but she has not been out on her own at all since coming home and yet would know her way around this area. This is something that needs to be encouraged as being in a restrictive hospital environment has made her more disabled than ever because she now suffers from Agoraphobia and complains of dizziness – this is evident mostly when she has just taken the drugs and she has to lie down. She clings on to my arm when walking and I am trying to get her to walk on her own and encourage that.
I am so lucky to have so many good friends who have offered me help and assistance with Elizabeth.
Elizabeth is excited because next week she will be staying with the rest of the family for a week so I have informed the Home Treatment Team of this fact today. Not one of the three consultant psychiatrists responsible for her care were available to speak to me though.
Whilst I have reported this condition called TD I fear Elizabeth has developed I appreciate nothing can be done immediately but it should not be overlooked in the future and yet more drugs offered to counteract another. Thoughts should be given as to saving money to the NHS and these drugs could be affecting long term physical health. Also concomitant prescribing of drugs should be very carefully considered as some drugs may be contra indicated. Therefore I believe Elizabeth should see a neurologist eventually.
Elizabeth is here with me now and is approving. There are no secrets between us and she would like to comment now – she said she wishes there were the same members of staff on a day to day basis although I can understand this is impossible but she also wishes it to be known that she is not happy with the arrangement of Home Treatment staff coming twice a day and she is saying she has told them that as this restricts her life. She also says she does not like be questioned constantly and I thoroughly agree with this – I can understand when the questioning is regarding her health but some questioning in her own words is “intrusive” – I am in praise of her use of vocabularly – it could be that she is reading a lot more since coming home and I have some very good books here – the one she is currently reading is by Becky Shaw.
Amyway, I as a mother am delighted with the progress of Elizabeth and how we are all getting on together as a family. Things are different now but I just wish the care was humane in the UK like it is in Tornio, Finland – I wish I lived there and there would be open dialogue and psychiatrists that take a different approach and do not force drugs. In this small area of Finland they have 95% success rate and I hope to visit this country to see for myself and hope that one day we will have open dialogue here in the UK as this is what all the former patients and parents I am in touch with would like to see.