We are no longer being bothered by the Home Treatment Team visiting our house nearly every night. The Deputy Manager of the HTT phoned me at work and told me they were handing over are to the community health team and I was right to have my reservations. I was told by the HTT Manager of a date next when the necessary blood test could be carried out but I told her that we would be away then. Because I rely upon lots people to take Elizabeth to such appointments it is difficult sometimes to fit in but I know this appointment is necessary at the end of the day so I went out of my way to arrange for more than one person today to be involved. I thought it would just be a simple case of turning up to the local clinic and having this blood test done as I had already found out the times this clinic was open when I phoned previously. Elizabeth is not capable of getting herself anywhere at the moment. She suffers severely from Agoraphobia and needs help in getting out places due to this and also she can hardly walk now since being put on Clozapine. Whoever said this was a wonder drug! Far from it as it is affecting Elizabeth’s physical health to such a degree that she is limited to what she can do. It also causes weight gain apart from dizziness and she has complained of double vision to us. Elizabeth has now been referred to a Neurologist as I am concerned about the sharp arm movements I have noticed whilst she is walking out and others in the family likewise have noticed this. So I had arranged for someone to take Elizabeth for this appointmen at the Clozaril community clinict between 9.30 and 12.00 pm today but unfortunately I got a call whilst at work to say she could not have this blood test. My first thoughts were that it was refused and I had to go out from my office and call the Home Treatment Team as the drugs were running out this weekend and without the blood test, the drugs would be refused and plus I had arranged in place people to help me which is what I have had to do all along in order that Elizabeth can stay at home in accordance with her wishes. I later found out that the blood test had been refused because the nurse did not have the right sized needles and the ones she had were too big so that meant that the carer I had appointed for Elizabeth had to hand over to someone else in order to get her to the hospital and she had the blood test done there and that meant having to go and collect the drugs from the pharmacy so two lots of waiting time for someone who is not well! So when there was the problem about the prescription being given at the hospital the carer had to make calls but apparently a receptionist at the community team was very helpful and went out of her way to ensure the carer was initially able to collect two weeks of the chemical – things should never have been so complicated as this. The nurse apparently said that if she had known Elizabeth was going to the clinic she would have ensured she had the right sized needles. However I made a point of telephoning this clinic. Before I knew that the drugs had been given for Elizabeth I got on to the Manager of the Home Treatment Team who was in a meeting and not one person has phoned me back. My thoughts were that if things were not working out with the community team she needed to continue with the current arrangement. Anyway tomorrow someone from the community team is ringing me and this person will speak about future arrangements – lets hope she rings. For me to go mid-week to collect the drugs is far from convenient so I have to appoint people to help me myself. Why cant I pick the drug up from a local chemist – previously the drug was delivered to Boots and I could get there on a Saturday to collect. I was told by someone there was not a clinic in the local area where I could collect the drugs and the only place was the community health clinic and I am going to get on to Novartis about this as I just cannot believe that an arrangement cannot be made to collect the drugs on a Saturday. What on earth is going on. It has been a very upsetting day for Elizabeth today especially as at the clinic she spotted someone she knew and I cannot say more than this but you can guess that this is not good at all and is a matter of health and safety. Something needs to be done and it is a good job that Elizabeth has mentioned this to me as it could be detrimental to her health to suffer stress as a result of spotting someone she knew that I cannot talk about. Anyway I hope I get that call tomorrow as it is important that things run smoothly from now on. It is not fair on Elizabeth to have to go through all of this.
Elizabeth calmly said it all turned out well in the end but the impression I got from the carer was that all the waiting around did affect Elizabeth and none of this should have happened in my opinion.
Anyway on a brighter note I have a party to go to at the weekend and a full day on Saturday where we meet up with friends, some of whom are survivors who can pass on good advice for Elizabeth having moved on in their lives despite their shocking care. I am also excited about the course I am going on “From Diagnosis to Dialogue” – thank God there are some Professionals in the UK who really want to see decent care and especially since I know of some decent professionals who have been trying to change the system for over 30 years and it is the Politicians who are the ones who should be listening to the patients and carers not just to the Professionals. It is the taxpayer who is having to foot the bill for care that is not working and the system is abusive and it is a travesty that this abuse is allowed to go on in a so called civilised country. Perhaps some of the Government ministers should attend these wonderful courses themselves so they can learn what needs to be changed.