Since 15th March, Elizabeth has been held at Cygnet Private Hospital, Stevenage for assessment purposes under Section 2. There was an initial two week period without drugs (three weeks in total) where Elizabeth seemed to be improving day by day and was stable without any problem and she was refusing every drug on offer. We have never seen her look so good and she was alert being without any drugs and were no problems on the ward during this drug free period.
After the initial two weeks – 10mg of Abilify was given and the Psychiatrist was not there on duty when I found out about this. I had advised Elizabeth to take something as I heard injections can be forced upon people whilst under section if they refused the drugs being offered. And so Elizabeth took my advice and complied without any problems. I thought this would be the quickest way to ensure her early release and a week ago at the last ward round I was full of hope as I was told that there was no reason why she should not be allowed out for the family holiday which is only next month.
The problem is that there have been two changes in the drugs only recently, just prior to Ward Round and of course someone is bound to feel the effects of this. I was therefore most disappointed today to learn that yesterday that drugs have been increased to double the amount of Abilify (20mg). I wanted to speak to the Consultant Psychiatrist to see if he had granted any leave yet but it did not appear so – when I asked about her progress, having visited throughout the Easter weekend on the ward when she was fine, witnessed by friends and the rest of the family, he said that she was not too good right now and I was not surprised when I heard that the drugs had been doubled to 20mg. I wanted to hear whether my daughter would be allowed to leave hospital shortly and come away with us on a family holiday we had booked on farms in both Devon and Cornwall as I needed to pay the final balance but no definite answer was given. I now do not know what to do about this holiday that we were all so looking forward to. What is the point in paying the rest if she is not allowed to go – this will spoil things for everyone in the family and getting away to a place where there is fresh air, good food, hopefully sunshine would do her the world of good.
I am invited to the next ward round which on Wednesday 6th April and according to the consultant psychiatrist will then be told the full facts. I have already been asked to agree to a CTO (Community Treatment Order) – this is just another name for forced drugging to ensure compliance in the community and costs extra money on top – I wonder how much extra this costs. I said that it would not be necessary or words to this effect at she was happy to take the Abilify and I see this as a much better alternative to the Clozapine (made from talc and aspartame) previously prescribed that resulted in her having this terrible life threatening condition (loss of control of her tongue) which got stuck at the back of her throat- ie NMS – which is why I felt I had no choice but to take her off the drug slowly and gradually so she did not suffer any pain or withdrawal symptoms throughout titration and was going out up to the last minute – taken out by my carers. It was four days after stopping the drug completely that she developed a nasty cough/virus and this was when I immediately sought private professional help outside of my local area (Enfield) and turned to Kent where I was prepared to pay a lot for a luxury rehab facility.
Cygnet Hospital must be costing my local area (Enfield Mental Health) a fortune – I reckon it must be costing circa £10000 per week and yet I am more than happy and quite prepared to pay out of my own pocket so that my daughter can experience a more therapeutic environment as she wishes to make friends of her own age. I have seen some very good places and healthy alternatives to a ward.
Previous care homes have been a disaster. In one local care home that must have had say c.12 occupants she was dreadfully abused whilst on maximum levels of drugs Quetiapine 800mg. How can you function on this! Every time it was time to go back to this scheme she reacted and certainly something extremely serious happened there. I turned up one evening to find the Sapphire Squad and the Drugs Squad there speaking to my daughter who apparently had gone missing. This is written in detail in the files. With a member of staff sleeping in throughout the night there was no security and whilst the police were there in my presence someone kicked the door open in the hallway as the latch had broken. So absolutely anyone could get into the building and Elizabeth’s flat was on the ground floor which made her a prime target for people visiting other residents which I wont go into here.
The other care home based in Northampton was where she was sent from Cambian Healthcare in Wales. At least a two hour journey from home and she was there for a few months and first of all she liked it but soon it became difficult to get through on the phone and their explanation was that there was a poor signal in her room. They then tried to get her to choose between Mum and Dad for next of kin and a solicitor I appointed did some enquiries which led back to local social services who were trying to arrange a CTO. They did this by depriving the drug Clozapine when my daughter told me she did not wish to return back to care. It is really shocking what lengths they went to and this prompted me to write my account of what happened called “Get Her Back We Are Paying For That” Yes the taxpayer is paying for this and the treatment of my daughter was appalling. I had to appoint solicitors in a case that was all about “Deprival of Medication – Community Care”. We then were subject to constant visits and infiltration of social services staff with the Crisis Team who were visiting at the time to ensure re-titration of the drug Clozapine and this was done to report any negative things back to social services for court purposes.
It is not the case that I deprived the drug Clozapine -this was done due to serious concerns for her physical health and the titration was done extremely slowly and carefully thus avoiding withdrawal pains with plenty emphasis put on healthy diet and nutrition, whereas when the team deprived the drugs, she was left to withdraw without anything at all. Wherever I turned the answer was always the same -take her back to the care home but now I can read to the full extent of everything in that the care home refused to release the drugs so even if went to collect the drugs as I had offered, this would have been refused to me.
It grieves me to see my daughter on another ward however nice staff might be as so much effort went in to cooking healthily and using pure ingredients and other efforts by my carers since coming home. Elizabeth stopped smoking since coming home. I made a real effort to buy only the best organic food and drinks with no additives. She was talking well and able to reflect clearly on her time on previous wards and shocking memories and was just starting to open up to some of my friends who have suffered themselves from similar experiences ie. peer support and together Elizabeth and I attended conferences, meetings with former patients, open dialogue workshops where we took part with professionals. When she came home after nearly three years away I bought nice chairs to lie on in the garden and I had to buy her all new clothes as many of the clothes were too small as she had piled on the weight with the Clozapine and could hardly walk. Elizabeth had to cling on to our arms like an elderly person. She complained of dizziness, blurred vision, heart/chest pains and she had developed tachycardia on Clozapine and been given for some reason Clozapine chemotherapy and metformin which is contra indicated. She had developed Agoraphobia from being on a locked ward and not allowed to go out much. I have been trying to find out the real reason why she was given Metformin but the Bethlem have not been forthcoming with this information. I thought she had diabetes so I booked extensive private tests. I even went a step further as it had been recommended that I have the P450 liver enzyme tests done. I never did think my daughter was mentally ill but rather a victim – a victim of the most terrible form of abuse that had occurred in the first instance and due to vulnerability under the care system as documented in the files in-depth. No-one will take any responsibility or provide the trauma therapy that is really needed as drugs certainly are not the answer. Knowing that in my local area Enfield I would get no support at all especially having read all their nasty comments and conversations I then tried to get the care transferred to another area as I have found that we got on with professionals who attended the INTAR and ISPS Conferences but these were from areas such as Liverpool, Nottingham who were keen to see change but it would seem like this is a post code lottery – some areas are prepared to look to the future and wish to see a better system whereas others are content to just carry on as normal.
I hope by writing this blog everyone can see the full extent of what is wrong with the current system. There is supposed to be a shortage of money but it does not appear my local area Enfield are at all short of money judging by what they are paying out right now.
Everyone at home is missing Elizabeth but I respect her wish to “find herself” – however I do not think this could be achieved either at home or on the ward where she currently is. Something different needs to be tried other than secure units and care homes.
I have shown Elizabeth pictures of some wonderful schemes that are a bit different from the average care home where good friendships can be formed in a therapeutic environment. The cost is a fraction of what is currently being paid. Elizabeth looked at these pictures and showed an interest. When a placement is being organised the team give a choice of three different placements and I myself have found three different placements of a therapeutic environment completely different to what has been tried and failed in the past. Last time this was done at Cambian – there were two therapeutic communities but she only saw two placements and the cheapest option was a care home but Elizabeth was not amongst many people of her own age there and became isolated and did not go out much. Being stuck on a hospital ward long term did her no good and she was dependant and reliant on staff within the care home to take her out. When we took her to Woburn Abbey she struggled with issues such as panic attacks but since coming home some of my dedicated carers have taken her out in crowds and to places where she could socialise – places like china life tea and saunas, hairdressers, parties, exhibitions, shopping for healthy food, out with other people for drives, fishing, outings, cinemas and shows in London. We have tried to do so much in the absence of any care of help whatsoever by our local area Enfield. I have a care plan which I have just sent to my MP Joan Ryan but there is nothing on offer and it wrongly states that we are happy.
From May 4th there is hope in the form of Open Dialogue and I have already applied for transfer of care to another area where they have Open Dialogue. I can’t wait for this to commence. At one recent conference we took part in Open Dialogue with professionals from other areas and Elizabeth was the one who started off the conversation and spoke voluntarily on how it felt to be taken to court. Professionals were in tears when they heard her speak. I will never forget that phone call I had whilst at work to say that the girls were hiding in a cupboard under the stairs as social services were yet again knocking yet again at our door and they begged my lodger at the time to say they were out. As Elizabeth said in her own words “its not fair Mum – they are asking me to choose between you and my Dad” . This shows the system up for what it is in my opinion and how much there is need for complete change and a more humane system.
I have lots of friends who have sons and daughters stuck in institutions for many years and I think it is so important to bring this sort of thing out in the open as it affects everyone, which is what I am doing. The spending of huge sums of money affects everyone at a time when there are huge cutbacks and I am willing to pay myself I am not running down the hospital but just observing everything that is going on in respect of my daughter’s time there as I would not wish for her to be trapped on a locked ward that is meant for assessment purposes where she cannot even have her own possessions in her room for too long a period of time and she will always has a home with us but, at the same time, I am happy to let her go and for her to get the trauma therapy she needs in order to become well and it is not drugs that are the answer as even on the highest levels of drugs, she could still remember what happened and this is all too easily dismissed by doctors. In this case the Consultant Psychiatrist is a man but Elizabeth told me she found it difficult to speak to men and therefore is holding things back. She even admitted this fact. In order to get well she needs to go somewhere where she is not alone in her experiences. For instance when she stopped taking the Clozapine I heard over and over again “you don’t know how I feel” – intensive trauma therapy is what is needed in a pleasant safe, humane therapeutic environment where even if this is a fair distance from home, contact with the family is encouraged.
I will keep you all informed as to how things progress and today I contacted my local MP just to inform her of our current circumstances and following on from our joint visit to her not long ago.