Elizabeth has been at home now for one year and three months without any problem whatsoever.
We have had to rely on close friends and family to help us since she came home from the care home. Without the help of the close friends and close family none of this would be possible and I rely on such help as blood tests have to be carried out, chemicals collected and blood packs collected from another location in another area.
During the titration of Clozapine close friends remained with Elizabeth all day whilst the team would come in twice a day and were supplying their reports back to social services as we were once regarded as a special case for court. We have had problems with the supply of these drugs before on more than one occasion. During the titration there was one instance where nurses tried to take away the chemical Clozapine and tried to revert to twice daily visits rather than once a day as had been requested by both Elizabeth and carers. The team tried to take back the drugs to resume twice daily visits at my home as they were ordered to and they were asking very intrusive questions so it was quite obvious what was going on and now I have the files to prove this. Another occasion carers were turned away from a local clinic and were told to go to the neighbouring Borough to this Wellbeing Clinic where Elizabeth has made it clear to everyone she does not wish to attend and this is where social services are based. On the one occasion Elizabeth attended this clinic it was obvious we were being recorded on one of the nurses mobile phones and apparently there was a problem with this recording and I commented only to be told this was normal practise. Well I do not see this as good practise at all.
This is what my carer was faced with this week when calling to collect the drugs from the local hospital:
At pharmacy carer was told “Haven’t you been told you now collect the drugs where you have the blood test done?” No we knew nothing about any change in arrangements as this arrangement had been going on for a long time without any problems.
My carer then went to the reception of the blood test department and my carer said the following “I have come to collect the drugs for Elizabeth and I understand the drugs are now delivered here”
The Blood Test Unit then said “Oh no we do not get the drugs here”
My carer said “The pharmacy told me they are here for collection”
Blood Test Unit “No we do not have any drugs here”
My carer then went back to the pharmacy and spoke to the pharmacist and said “the drugs are not here”
Pharmacist said “where do you have the blood tests done”
Carer – “at this hospital”
Pharmacist: “They are not here but they are at a clinic called Wellbeing” (this clinic is a long distance away and in another area – this is the clinic that Elizabeth does not wish to attend”
Carer “I am not going there and can only collect on Saturday”
Pharmacist “Oh I will get the drugs back then for you to collect on Saturday morning and the Pharmacy is open on Saturday morning”.
The Wellbeing Clinic is where social services are based. Elizabeth has already said she does not wish to go there – we were being recorded and this is not right. The clinic is situated a long distance from home in an area that does not hold good memories for Elizabeth in any case and Elizabeth was not keen to attend on that one occasion but we were put in a position of no choice as we were turned away from the pharmacy at the local hospital. It is more awkward for my carers to attend all this distance and I can quite understand why no one wants to go there as there is an investigation going on re missing files on serious allegations and “good plans” between social services and care home.
I am happy I attended the Council’s Scrutiny Meeting where I was the only member of the public present. I was told to leave at first so that the Scrutiny meeting could be conducted in secret – I had to sit out for the first half an hour.
Anyway I wrote to the local councillor I met at this Scrutiny Meeting about the problems we have encountered in picking up the chemicals. She has written back to me to say that this was due to an administrative error. I have written to say that my carers have to go to both hospital and neighbouring Borough to collect the blood packs separately. This is not very good at all in my opinion. I will write more about the Scrutiny Meeting later as I have not had a chance to properly study all the paperwork. I am not sure that Elizabeth would have enjoyed the meeting as much as some of the conferences we have attended. However I did mention that Elizabeth may wish to come to a future meeting – it is up to her but I am always happy to take her along with me.
Today I went attended the local hospital myself with one of my carers and the chemicals were finally there. If I had not written to my local councillor they may not have been there.
Unfortunately all of this has meant that the morning has been disrupted. Elizabeth and I would normally go to the Zumba class but instead we have to sort out about getting the drugs which were running short.
Without the help of my carers Elizabeth would not be at home today and once under a care system is rife with control and coercion I may not have been allowed contact with my daughter as they were saying “to whom does she want contact”. This was all being planned and extra funding being arranged for a CTO and why should Elizabeth be on a CTO – this alone is stigmatising and unnecessary. I am very pleased that Elizabeth told me how she was put in the position by medical professionals to choose between Mum and Dad and how she did not think this was fair. When I mentioned this to the lady assigned to investigating my complaint which was very serious as drugs were denied for four days and this resulted in court in a case for “Deprival of Medication” – this person could not see anything wrong with putting a patient in that position. Anyway the team then decided to take the matter to the Court of Protection to deprive liberty, sever contact, restrict visiting rights and force return Elizabeth to a care home hundreds of miles away from home. This is all very wrong. Also at home Elizabeth is not going without food because at the care home if she had run out of money or could not manage to budget properly there was no food at weekends – well this is what I have clearly read from the files.
Speaking of food, I have confronted Jamie Oliver and his campaign on sugar – I would like to see Jamie Oliver involved with an even bigger challenge MH care – nutrition. The NHS pushes enormous quantities of powerful mind altering drugs at MH patients and they do not work- this is why I have had to turn to Rotterdam to get accurate treatment from the world’s leading expert in metabolism. I believe that nutrition is particularly important when you are on mind altering chemicals and I had all the tests done twice at Bio Lab to prove my point but such tests are not recognised by the NHS: Here are a few more things Jamie Oliver should be looking at mentioned in the hand written piece by guest blogger Stephen who comes round to my house to advise Elizabeth on health eating d is a good cook too. What is in the food that we all consume available in supermarkets and passed as being “safe”? I was very keen to feature this on my blog as this not only affects MH patients but the wider public and their mental and physical wellbeing. Here are some highlights that Jamie Oliver should look closely at in addition to just sugar:
Monosodium Glutamate (MSG) – All you have to do is look at the product label and avoid anything with MSG and its ‘E’ number code which is E621, often hidden under “flavour enhancers or flavouring”.
Avoid anything with Glutamate in ingredients/anything with ‘……….protein (ie why protein isolate)/autolyzed yeast, gelatin, ‘hydrolyzed’ ie hydrolysed vegetable protein, sodium caseinate or calcium caseinate/yeast extrat.
It has been publicised recently about ASpartame (artificial sweetener leading to migraines, depression, weight gain, Parkinsons, multiple sclerosis and various types of cancer. Shame on the FDA – the FDA petitioned for aspartame to be added to milk! without even having to label.
Avoid Saccharin, Sucralose, Sorbitol and Acesulfame-K confusingly labelled Acesulfame Potassiuim.
Extra Virgin Olive Oil (food fraud – adulteration with refined oils)
Rapeseed Oil – often found in humous – back in 1956 this oil was banned for human consumption by the FDA.
Synthetic D2 – see “Why don’t you Want to Rely on Fortified foods” by Dr Mercola.
Non-organic cartons of “alternative milks (containing synthetic form of Vit D called D2 (ergocalciferol).
Fortified Breakfast Cereals – iron used to fortify cereals is not only synthetic but enriched with toxic iron fillings. Ensure you are getting enough bio available iron. See You Tube video by Dr Thomas Levy) – His website lists an article on “why it is not necessary to fortify with iron (because high iron levels in the blood are toxic).
Fortified white wheat flour.
Stephen goes on to mention many more things featured on my website under “Guest Blogger – Stephen”. Well done for such a valid contribution to my website.
I must admit when I go shopping I have never stopped to closely read the labelling but maybe everybody should be fully aware of.
It is not just sugar – there is much more than this to consider.
Anyway I had better stop here as I have no end of things to do and tonight Elizabeth and I are helping at the Homeless Supper.
If I get a chance I will write about this Scrutiny Meeting and I have got another meeting next week I can tell you all about. I can hardly wait to attend this meeting and I am looking forward to the CEP’s conference too.
Before I end this blog, Elizabeth has finally had her referral to the larger scanner in Harley Street. It is not the first time I have had to take Elizabeth to Harley Street but I feel need to take a day off for this visit.