THURSDAY

Elizabeth and I were both up very early and a taxi had been booked. Elizabeth enjoyed seeing some of the sights of London she had missed whilst being sent miles away from home. I was taking Elizabeth out for a very nice day out and we both thoroughly enjoyed ourselves. I was able to show Elizabeth some very interesting places that she has never been to before – I did not know how Elizabeth would take to the crowds and experiences but this was a good way of finding out. Elizabeth took to things really well considering she has been hospitalized for years in a strict and oppressive environment and then transferred to the care home. We had a few appointments but after this I took Elizabeth to the wonderful French bakery – wish we had one of these branches locally where we live as I would be a regular customer. After that I noticed a bus route that could take us to the train station which would directly get us home and I said to Elizabeth that it would be good to restore confidence in her if we travelled back on public transport and we did and she was fine. Elizabeth said she did not get out that much – at least at home she is getting out and I was worried that she seemed to be suffering a bit from Agoraphobia when she first came home from the care home. Never did she go out alone there because she did not know her way around but still I am sure Elizabeth could have made her way up the road and back to the care home. Same at Cambian but she was not allowed to even go to the corner shop. Why not – this is not encouraging for Elizabeth if anything it is harmful as she could lose her confidence. I have bought a key and she is free to come and go. As far as I have seen Elizabeth has plenty thinking ability as when we got back from this long day out Elizabeth straight away thought about feeding the cat.

Whilst we are very happy to have Elizabeth at home not everyone is happy about this but I cannot go into this right now.

Today, Saturday, there are various things I need to do apart from chores and I need Elizabeth’s help to take our cat to the vet for a start. I will need Elizabeth’s help to prepare some healthy meals for during the week and I have taken out a vegetarian cookery book for her to decide which meals. Whilst I am not vegetarian myself I think it is good for Elizabeth to look at healthy eating and there are some very nice recipes in the book I have.

As always we cannot do anything until the Home Treatment Team come and sometimes they come at 12.00 pm and then early in the evening. All the time they are checking up and reporting to the social services – I know this is the case only too well and they can try and deny it all they like but everything is being reported in writing which I have read. A Home Treatment Team should ONLY be concerned about the health and not be talking about her going back to the care home for instance when it is not their decision. It is like a nurse trying to pull Elizabeth between her Mum and Dad – all a nurse should be doing is caring about the physical health of my daughter.

Now Elizabeth is back on 350 mg of Clozapine – this was not the dosage from the Bethlem recommended but a dose recommended by a psychiatrist who tried to cut ties with me as a mother at this private hospital miles from home. I do not know why the local team go by this increase when all of us as family have witnessed Elizabeth is fine on next to nothing of this drug and despite their denial of the drug to my daughter after more than 3 days she was fine. Soon I have a course lined up in Liverpool and another one more locally that I would have liked to take Elizabeth to. I must phone up the one in Liverpool and also enquire to see if Professor Pirmohammed is back yet. When someone is treatment resistant this needs further investigation and this is supposed to be the leading expert and I wish him to see Elizabeth. If Elizabeth is on the minimal dosage it surely is better yet all along I have been the one accused of stopping the drugs when it is the team who have denied the drugs for several days on end leaving up to sit for hours waiting and waiting and waiting until in the end I ordered a taxi up to Harley Street in order to get an appointment immediately.

I have found out with the denial of drugs to my daughter for several days that the people who have the greatest power of all are social services as without their assessment medical professionals flatly refused to deal with me and that meant my days holiday were spent waiting for hours and hours with Elizabeth in the local hospital, clinics for blood tests, on the phone to NHS England and Emergency Social Services, none of whom could help me immediately. Social services do not know anything about the drugs so this is amazing that the power of when to give these drugs lies with them so I could see as otherwise the consultant psychiatrist who eventually saw us with two other people to back him up flatly refused to give this drug but it had been less than 48 hrs and that meant Elizabeth was left in a position where she had to start from scratch and Clozapine is a highly risky drug yet they denied it to her by trying to force me to take her back to the care home against her wishes where no doubt she would have been sectioned despite the fact she was of no risk to the public or to others.

http://www.telegraph.co.uk/health/healthnews/10865390/NHS-breaks-promise-after-Winterbourne-View-scandal.html

Take a look at the above link – well this is a situation that is affecting many people and the public should question as MH Cop says ” What the hell is going on” – one of my favourite blogs of his and now I am asking this question that it would cost a fraction if Elizabeth was to remain at home. She is doing fine, she is looking better, I could not believe how she coped with rush hour crowds at a busy station, going into big buildings for appointments and walking in high heels when she does feel unsteady on her feet. If Elizabeth can cope with this then there hope she can restore her confidence enough to go out alone eventually and my biggest dream would be to see her have a job even if part time. I would like Elizabeth to have a normal life.

The other thing is that I hope that the consultant psychiatrist will review her medication as I have received brilliant advice lately that the therapeutic dosage should be 100mg.

Today I am going to find out about the local gym and classes at another one as I am missing the wonderful gym I joined near where I work and some of the classes. This will do Elizabeth good if she comes with me initially to join in and then eventually can go on her own – I have been accused of being controlling yet if that was the case why would I give a key and encourage Elizabeth to go out on her own. I would be happy for her to have decent company and certainly she has had that over the past weeks with all my wonderful friends coming round and helping me not that she cant manage in the house – she is being treated like a small child whereas I as a mother know her capabilities more and the only thing she really needs help with is going out ie she could not get herself to an appointment or anywhere as she is unsteady on her feet however if she was on less of this highly sedatory drug and got out more and more to rebuild the confidence then anything is possible. This is the kind of help Elizabeth needs not a “babysitter” in the house however all my friends do not mind one bit in coming round to see her and she is surrounded by good people.

I am now going out to find out about these classes for us and what times they are on. It may also be a good thing to have a personal trainer come round to the house and also I think a nutritionist would be good. However with the money I give each week she is not wasting this on junk food I am pleased to say. I truly believe that diet and nutrition is so very important and can affect how you feel. I wonder if Mr Burstow has read that book yet by Dr Walsh – I am waiting to hear when they can all meet with myself and Elizabeth so I can explain what is needed and how to save more money for the taxpayer as it does not make sense to me that any A&Es are being shut down where there is plenty of money being wasted and I can provide evidence of this. Now that I have Elizabeth at home I can bring her along to meet them all.

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