I have just been on the phone to Novartis I spoke to the emergency telephone number, office of which is based in Frimley Camberley. I said I would be prepared to drive down tonight and collect the drugs needed for Elizabeth. I offered to pay for the drugs and offered to pay for a courier if necessary. I explained the situation to the pharmacist and said she had been refused by a young consultant psychiatrist because he said it was 48 hrs and it was not. I gave her the name of the new GP and she gave me the name of a new GP based in Northampton and that was a different name to the doctor I saw with Elizabeth when we came down who I was told was the GP. The GP surgery is called Kingsthorpe. Now Elizabeth has got a new GP who was very nice and efficient and produced a prescription for a week’s emergency supply of the drug. As you can see below this is allowed in an emergency which it is. So I asked now what would be the position with this drug which is essential and should have been provided in the circumstances when the care home refused to release it to Elizabeth (surely anyone could see this is an emergency). Well the pharmacist told me the drug had to be titrated up and that meant being put on a low dose. Well perhaps that is good because I was told that 350mg is a higher than necessary dose when the therapeutic dose of Clozapine is 100mg only. Perhaps that is a good thing. She knew quite a bit about the records of Elizabeth’s prescription and knew that Boots the Chemist were responsible for dispensing this drug but that Boots is not in the local area however again I would be prepared to drive down there and get that prescription. I said surely the Boots could have faxed the local Boots and sent over the prescription in order that I could have collected the drugs – well apparently I was told it does not work like this. So now Elizabeth has been deprived of this drug by the local hospital who flatly refused to help and social services who insisted on her going back to the care home when she wants to be at home refused to release the drugs if I called to collect them in person. They insisted on her going back. I asked who was in charge at Novartis and the person is Susan Price – I am looking forward to speaking to Susan Price tomorrow to see how we can resolve this situation as I have gone to the providers who have an emergency number and can supply the drug and would have greater knowledge than the psychiatrist as they would know exactly how the drug works. I wonder how I get on tomorrow and I will let you all know about this.

I am a very patient person and none of this is affecting me as I am resilient to stress and what is more surprisingly Elizabeth is extremely calm – she was a bit stressed at the pharmacy and that is not surprising as so were lots of other people who were waiting for a long time and complaining. So I could go down tonight to the other hospital but instead I will take Elizabeth there tomorrow – I was told this is the place to go as the local hospital is not a prescribing hospital any more but Elizabeth was hungry and she is very happy to be at home and not in the slightest bit stressed out.

Many of the staff had smiles on their faces in the hospital and when I questioned I did not get an answer. I complained at the wait as I have a cat to feed and needed to get back but it would seem like the consultant psychiatrist had to get together a group of other people no doubt to back him up to the hilt.

I had already spoken to the Director of Mental Health personally in order to get a psychiatrist over only to be told after the Director had left that he could not help me because it was over 48 hrs and it was not. Now it is over 48 hrs and Elizabeth will be taken to the hospital with me tomorrow in another bid to obtain the drugs and the head person of Novartis will be ringing me tomorrow and I will in addition be contacting my MP and my daughter her solicitor and my solicitors. It is wrong to deprive a patient of a necessary drug and in bold below are some details from Novartis on procedures. It is wrong to force someone back to a care home when they do not want to go and want to stay at home.

In addition I have been to the local carers centre and they were very nice and helpful. Elizabeth spoke and said she wanted to be home and also it is cheaper for her to be home than in a care home especially when it is featured in the local paper how much it costs to put someone in a B&B because the wards were overflowing and I recognised nearly all the patients there – still under the MH wards.

The answer is a National Metabolising Programme as if this care is not working and the drugs prescribed are ineffective then tests need to be done before prescribing them in the first place. As my daughter is treatment resistant I am very much in favour of this and see this as being a way to save money for the NHS as treatment resistant = poor or non metaboliser and therefore money is being wasted on drugs that do not work in any case. When someone needs a life saving drug for physical health they are often denied this and yet 14 drugs that do not work have been pushed on to my daughter Elizabeth and I see this as a waste of money.

Here are some of the instructions for Clozapine.

Last of all many decent professionals want to see change in the care system and I appreciate that they are up against a lot of power – I would describe my experience as UP AGAINST A BRICK WALL. However far from being discouraged I am feeling stronger than ever as I want a better care system for everyone in the mental health and I am highlighting in a very honest way what is wrong. PRACTICALLY EVERYTHING. There are good staff, not everyone is bad and they have to put up with a lot however much money is being wasted and I as a mother want my daughter home plus she wants to be home and has said this in front of others without being put under pressure by me.

Yes, a prescriber may write a prescription which includes refills. The pharmacist must receive the current (drawn within 7 days irrespective of monitoring frequency) blood work prior to dispensing Clozaril, for each refill.
3.What happens if a patient is going on vacation or is unable to obtain blood work during an emergency?

A one-week supply of Clozaril may be dispensed without a blood work in the event of an emergency/vacation, known as an emergency/vacation supply. Upon initiation of therapy, up to a one-week supply of additional Clozaril tablets may be provided to the patient to be held for emergencies (e.g. weather, holidays). Clozaril prescribing information (2005).

Two common circumstances that may require an emergency supply of drug include:

– the patient is unable to get to the laboratory for their normally scheduled blood draw.

– vacations or holidays interfere with their normal routine.

The patient must be eligible for weekly, biweekly or monthly blood draws and their white blood counts and absolute neutrophil counts should be stable, relative to the patient’s normal values. It is possible that a patient entitled to a one week supply of medication to receive a 2-week supply which would include their vacation/emergency supply of the drug. A patient entitled to a 2-week supply could receive a total of a 3-week supply which would include their vacation/emergency supply of the drug.


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