Since coming home from the care home it is noticeable that Elizabeth suffers from Agoraphobia – there are good days and bad. This weekend has been bad as once again my BMW car is back in the garage despite it being taken to the garage a week prior and no one could find anything wrong with it. The AA were called out but being without the car has given me some problems this weekend. On Saturday I wanted to go out and meet some friends and Elizabeth did not want to go out. Immediately just beforehand she was on the point of making herself ill. I managed to get her out by ordering a cab and Elizabeth admitted to me afterwards what a good time she had and that she was grateful I did persuade her to go out as she enjoyed herself. Today again without the car is a big problem. I had shopping to do and Elizabeth once again was making herself ill before hand and refused to come out with me. Sometimes even a walk up the road is too much and the team are constantly asking “have you been out today – was you out yesterday – have you spoken with anyone today” They also ask if Elizabeth is suffering from any side effects and she never likes to complain. Elizabeth admits that just before taking the drugs she cannot express her words properly. She has to lie down- she is on 350 mg of Clozapine but before this whilst at the care home she was being over drugged with other things on top – I do not encourage Lorazepam as this is a highly addictive drug but it is given out like sweets in the hospitals and a patient says they are stressed then Lorazepam is given or similar.
When Elizabeth was walking out with me last week and she wanted to go out just up the road, I noticed her arms were making strange movement and this I see a sign as the onset of tardive dyskinesia. It is only noticeable when Elizabeth is walking out for a distance and I am most concerned about this. These drugs are NOT designed for long term purposes and especially not for someone who is TREATMENT RESISTANT and she now has a diagnosis of PTSD which is backed by research. When there is doubt such as this about a diagnosis it is appalling that in the UK this is just ignored and nothing done about it. Well if there are such things as Safeguarding a patient then there should be such a thing as safeguarding in terms of their physical health and this is something that I as a mother am very interested in. There are people within a team that have no medical knowledge and yet are involved in decisions that can delay or determine treatment and there are such people with NO medical knowledge that try to encourage taking of drugs which is something that I disagree with. Only someone who is medically qualified should be involved to do with anything regarding the drugs and that person is the one who should make medical decisions and not prevent treatment going ahead or delaying it. Whilst Elizabeth can cook herself dinner, feed the cat and do basic things within the house the help she needs is not being offered to her and because nothing is being offered I as a mother am left with no alternative but to try and find such care myself and pay for it myself. I have been told to pick up Elizabeth’s possessions from the care home and I have had to arrange for someone else to do this. Elizabeth is excited today as her father has telephoned and her father wishes to see her for a week and I am very happy for her. The rest of the family can now see how well Elizabeth is doing at home.
Today she could have gone out fishing with a friend – she now has a licence but did not feel up to it. Today she could have gone shopping with me but the thing I feel will restore her confidence is young companions of her own age. I have introduced Elizabeth to my friends and people I have got to know who are “survivors” now getting on fine with their life. This kind of peer support is equally very useful for Elizabeth and I am finding that it is friends that I have everything to be grateful for as they and only they are helping me and Elizabeth right now.
Every day I have to arrange for someone to be round with Elizabeth but she is not entirely helpless. She is not a child – she has a right to be treated like an adult. She is not a risk to herself or others and not on a section or a CTO.
I hope the Department of Health take note of my recent comments as it is not right the way mental health patients are treated in the UK.