On this beautiful sunny day Elizabeth is back on Suffolk Ward. I am going to visit her over the weekend. She is not allowed out but drug free after 95 days. A couple of weeks ago she was discharged into the community following 13 weeks of being on various acute wards. Elizabeth was getting so distressed at being on wards that are volatile and noisy, witnessing the “treatment” of others who are being forcibly injected, drugged and some given ECT. This has only served to increase the trauma suffered. It saddens me as not long ago we sent her away to a lovely peaceful and natural environment which gave Elizabeth the strength to tell the entire family/close friends about what happened to her at the Moti Villa Scheme and other things not previously revealed. This care involved psychotherapy and the professionals were getting somewhere in helping Elizabeth for the first time. When Elizabeth came back home she deteriorated as there was no ongoing therapy and the area triggered reaction as this is an area where there are not good memories. She ended up in hospital when she refused to take the small portion of Abilify and has been allowed to withdraw although professionals have tried so hard to get her back on the drugs again. Each time Elizabeth has refused their attempts.
So the team placed her into a supported living scheme. The scheme was new but part of a network of similar schemes in a nice location. I felt happy that finally after all that time of being on acute wards she was being released and felt that anything would be better than being stuck on acute wards. I begged for Elizabeth to go somewhere first to a more peaceful place in order to prepare for her release into the community but this was ignored.
The house/scheme had a support worker and newly graduated psychologist and according to their brochure offered music/art therapy and aromatherapy. Despite my reservations I was hopeful that eventually Elizabeth could settle down and I hoped that she would be understood by staff working there just like the private MH professionals understood her. The longer you keep someone incarcerated the harder it is to rehabilitate them. When Elizabeth moved in there was no water and no toilets working and this was not up and running until the next day (Sunday) some time after midday. I think Elizabeth was moved very quickly in haste without much thought to health and safety/risk factors. Unfortunately Elizabeth became very stressed out in this new environment as too much was expected of her – it was too much too soon and through lack of understanding.
If Elizabeth has the condition Aspergers and PTSD then this needs to be fully understood in itself but she has been denied proper assessment and it is no wonder therefore that past care has failed her. MH professionals are not necessarily trained to understand such conditions as autism/aspergers which is essential.
I decided not to come round to see her immediately at the scheme but to allow her to settle down. She moved in on Saturday (last Bank Holiday). On Sunday I received a call from her asking me to visit. I brought round some of her possessions including her guitar as I hoped she would be having the music therapy whilst there. I felt happy in reuniting her with some of her things I could not give her whilst she in hospital. I met for the first time her keyworker who I really liked. I liked the house and area. I came away feeling positive. During the week I got a call from Elizabeth worried about her physical health. She had been complaining of backache, headaches and stomach cramps for some time before being discharged from hospital and kept trying to get help from doctors (psychiatrists) but on a psychiatric ward physical health seems to be ignored. All she was given was paracetamol but there were no intensive physical checks on her health apart from maybe blood pressure and weighing. So the support worker was woken up by Elizabeth and waited with her around 5.00am in A&E. Elizabeth had blood test/various other tests done which appeared OK but what she really needed was ultrasound or further endocrinology tests. I pointed out to doctors that there were specific problems mentioned in private tests I had done but this was not looked into. Elizabeth was very tired and sounded unhappy during her call to me and I felt very sad about the situation. The dedicated support worker must have been exhausted, waiting for hours to be seen in A&E but I am most impressed with this particular support worker.
The following Saturday Elizabeth still at the scheme but again sounded unhappy when I took the call. She had problem in accessing money and complained there was no food and I had to reassure her that the next day I would try and help her but there was a new support worker on duty this time. I have noticed that Elizabeth finds hard to adapt immediately to any changes and now there was a new person on duty. Elizabeth said there was no food but when I spoke to the support worker I was assured that this was not the case. I did not wish to come round that day as she sounded quite distressed and I did not want to make matters worse. On Sunday I called round to the scheme with a close family friend and Elizabeth was lying on her bed around midday not feeling at all well complaining still of physical pain. There was a lot of noise as workmen were making part of the living room into a medicine room. I think all of this contributed to upsetting Elizabeth too. How can any amount of medicine help someone who has suffered the most appalling abuse under care that has never been dealt with properly. Anyway I took her out in my car for a nice drive and we went right out in the countryside and Elizabeth started to feel happy again and was very happy when she returned back to the scheme.
Whilst out Elizabeth started to talk about her daily life at the scheme. I was concerned to hear that she had overheard private conversation to the effect that “…………….(Manager) of the scheme does not feel she is doing very well” Elizabeth felt relaxed to tell us more and complained about being put under pressure. She was upset by a visit from her care coordinator in the first week suggesting meetings at another location. This care coordinator was involved in recent safeguarding and I could understand Elizabeth’s reaction as this was triggering for her. She told me that she had reacted in distress following the care coordinator’s visit but the very nice support worker was on duty and knew how to handle the situation whereas others wished to immediately call police. This was a far cry from the private care we provided where professionals were able to talk things through and deal with situations effectively but when I read through the brochure of the scheme it says they specialise in mental health and learning disability but I could see that they have a “no tolerance” threshold. Elizabeth complained that everyone was talking at once on occasion/s – another time that she felt she was being ignored and a new lady had moved in so there was yet another thing for her to get used to. I feel Elizabeth was very much misunderstood by the majority.
From what I heard only one support worker was bonding with my daughter and understood her. There was a new resident just moved in and I found the new resident to be nice but in order to adjust to new situations what they should have done is just leave her alone to settle in for a couple of months at least. Elizabeth feels constantly tired having come off powerful drugs but there seems to be no understanding of this whatsoever.
The Psychologist who is newly qualified and attached to the house where Elizabeth resided did not seem to understand her. I don’t know what to think – sending Elizabeth away for four months with MH professionals/peer support/music and art therapy clearly worked wonders so I know it is possible to work with her but here, at this scheme, things were falling apart but this is reality – this is community living but is still restrictive when you are expected to attend this meeting or take part in activities immediately and what if that person does not feel well and does not wish to join in all the time. All the time the resident is being monitored as to how you get on and knowing that you are on a month’s trial adds to stress. This is in stark contrast to when Elizabeth stayed in the family home of MH professionals who allowed her time to adjust and settle in without pressure and demands put upon her. Elizabeth could have coped better if she had been sent somewhere first to adjust in a quieter environment having been on violent/noisy acute wards for 13 weeks. You cant just take someone from acute wards after all that time and expect them to immediately take part in everything.
I have written to the owner of the scheme and told him what worked for Elizabeth – ie psychotherapy, art therapy, music therapy. I complained that I was not notified of Elizabeth’s transfer to hospital by anyone at the scheme. I told the owner I liked the house and area but questioned the ability of staff to bond with Elizabeth and said it was not about qualifications but life experience and that only one person had a way with her. I mentioned I knew someone else who could maybe help but that it was not a good situation when only one member of staff understood Elizabeth and knew when to stand back allowing her time and space. I spoke to the Manager of the scheme who understood that Elizabeth could not process too much information all at once and could cope with too much talking. After all, take a look at the amount of drugs Elizabeth has previously been prescribed:
800mg Quetiapine Nocte
Clonazepam 1mg Bd
lorazepam 1-2MG po OR 1/m PRN (4MG MAX/24 HRS)
Haloperidol 5-10mg PO (30mg max/24 hrs
She was also given zopicol.
The Manager said the scheme was still open to Elizabeth but I pointed out it was extremely damaging if staff called police every time Elizabeth showed signs of distress and that if they stepped back and just left her alone she would calm down. Also they should allow her to slowly/gradually adjust to her new environment instead of pressuring her to participate and attend meetings immediately. She had after all been on acute wards 13 weeks.
Now on Suffolk Ward it has only been one week since her arrival. There is a new Acting RC called Dr Liveras. The Psychiatrist who has seen Elizabeth twice so I believe is called Dr Abraham. Elizabeth is in a shared room right now and I have visited her twice in the week bringing possessions and food.
I have to take yet another day off to attend a meeting next week on Tuesday next week and hope Elizabeth’s sister can also attend with me. It is so horrible to think that Elizabeth is cooped up on a ward not allowed to go out in the fresh air. This is what caused Agoraphobia whilst at Cambian. It is a step backwards as there was never any problem in her going out and walking outside of the ward was quite therapeutic for her. I hope this situation will not drag on and also it is a very costly situation.
Yesterday I got a call from Elizabeth that concerned me. A doctor (wont mention his name) suggested to Elizabeth that she should think about going back on on medication. He was not suggesting anti-psychotics which Elizabeth cannot metabolise but suggested mood stabilisers. I had heard that they are good by someone I know who has Bi Polar but nevertheless as I do not know anything about these drugs I decided to look into matters further by contacting an expert on the drugs that I know and I was informed “mood stabilisers can trigger psychosis themselves and no mood stabilisers are indicated for the condition of PTSD” and I was told that “this is a dangerous “fashion” in psychiatry.” I had also looked up the mood stabilisers such as Carbamazepine or Mirtazepine which are said to have disastrous consequences re PTSD. I looked up Topiramate which is for seizures and only approved to treat seizures but sometimes is used for other conditions yet not been approved by the FDA to be safe and effective. Therefore I decided to ring the psychiatrist concerned yesterday afternoon quite late in the day. I told him I was aware of the fact he had suggested mood stabilisers to my daughter to which he replied that he “had not”. There is no way that Elizabeth would have spoken so openly using the word “mood stabilisers” had she not been spoken to. He started to get agitated when I insisted that Elizabeth had been spoken to and tried to make out this was a lie. I said no way was this a lie and he went on to say that the call was “being recorded” so I told him likewise as there were people around me witnessing this. Suddenly the line went dead. The phone had clearly been put down on me. I then contacted Elizabeth to tell her what more than one leading expert had told me about the safety of mood stabilisers. I said “whatever you do…. do not take them as they could cause psychosis in themselves”. More harm than good.
Elizabeth also told me that she had a visit from Clinical Psychologist Dr Mukherjee who claimed to be able to help her. I don’t know what she means by that as from what I understand this Psychologist is shared by lots of different wards and I cannot see that a once a week visit can help at all whereas if Elizabeth was sent somewhere where they specialise in rape/abuse/PTSD/anger management on a long term programme such as the Retreat offer then Elizabeth will eventually get better. Under a small Assisted Living Scheme you cannot deal matters of anger management and certainly this is something out of depth for someone newly qualified in psychology. It requires much more specialised treatment and there are special treatments available that are effective such as EMDR. It is only natural that I should ask for this to be provided.
I cant believe that the team ignored health and safety risk factors by placing Elizabeth straight away into the community without providing the specialised psychotherapy/counselling/EMDR etc. Releasing her into a scheme that was not ready and had no water/toilet facilities up and running.
As Inspector Brown said in his blog “what the hell is going on”.
I am going to write next a letter to the Rt Hon Theresa May open dialogue style – I am very concerned that there is the wrong care being provided and not available to so many, not just Elizabeth and that there seems to be no accountability so if there is no accountability how can anything ever improve. Also the general public should be questioning where public money is being spent just as I am.
There are two alternatives:
Either change procedures at the scheme to be more accommodating towards Elizabeth, employing only staff that can work with her and not enforcing her to attend straight away meetings and ease back on monitoring her progress when all she wants to do is just have time and space to settle down initially. The support should be in the background as and when she needs but not forced upon her as it she will ask for it but she is not alone but she should be surrounded by only those who understand her and not put pressure on her. It is this view that should be taken and staff briefed on how best to deal with Elizabeth so Police are not called constantly if she becomes distressed. I have proven that MH professionals can work with Elizabeth to the extent she travelled far and wide with them so how comes all is failing in the community and only 1 support worker really understands her and knows best how to deal with situations.
The other alternative is to provide funding for Elizabeth to go away on a specialist long term programme for a year to The Retreat, set in beautiful grounds where she can relax and take part in the correct kind of therapy relevant in dealing with the trauma resulting from the abuse she suffered whilst under care through Enfield. I think seeing as she has been abused under care itself it is only fair that this is provided and Elizabeth gave me permission to deal with the Commissioners in this respect. I was told that I should be hearing next week in this respect and the person responsible for the funding under MH is called Peppa Aubyn. The Retreat whilst not local could benefit her making a return to the local area successful in due course and if she is to remain on a section then certainly this rather than an acute ward should be provided as an acute ward cannot provide the right kind of therapy. An acute ward is not the right place for Elizabeth to be.
A scheme open, coupled acute ward is costing a money and I don’t want this situation to drag on for weeks and weeks on end but on the other hand measures must be put in place to ensure that reoccurrence does not happen when Elizabeth is constantly sent back to the wards. The Rt Hon Theresa May would like to see people living in the community and not incarcerated long term but first of all you need staff that are highly trained to deal with situations like those under “working to recovery”.