Elizabeth remains on Section 3 (no risk to self or others) but it would appear that the team want to hang on to her longer in an environment (an acute ward) where other Doctors feel is totally wrong. Last Friday, Elizabeth told me she visited her scheme which had been left open for her return again. The scheme is situated a distance from the hospital and you need to go by transport. I was surprised that she was left to visit alone but, at the same time, I was pleased as it shows Elizabeth is capable but she was anxious and upset at the length of time waiting for buses. It will take time for her to adjust and regain confidence. Elizabeth spent a few hours at the scheme and there seemed to be no changes in staff, apart from the fact the very nice care support worker was no longer there I was disappointed to hear. Elizabeth especially got on well with 1 support worker and Elizabeth had gone out of her way to find where she was. I was impressed with this member of staff who very dedicated and had that special quality in terms of her understanding of Elizabeth. When she was not there, Elizabeth once said “no one understands me Mum”. Certainly no-one understood what it felt like coming off drugs after so many years and this was a scheme like many others who encouraged the taking of anti-psychotic medication etc. I’m sad that this wonderful member of staff is no longer there and maybe she now works at another scheme and I wonder why she left?
What went wrong at the scheme:
When Elizabeth was discharged from hospital there was no running water and no toilet facilities until late the next day. The care coordinator recently tried to deny this. Elizabeth asked me to visit the day after her arrival when services had only just been restored – this was late afternoon. There were no cooking utensils or pots/pans etc. I was surprised they could just discharge someone from hospital in such circumstances. My first impression was – nice house – nice area close to all amenities -most of all a brilliant support worker and it is not often I can say this. I later brought round garden chairs, Barbeque, saucepans and cooking utensils and a fridge for Elizabeth. This scheme has not worked out for Elizabeth on two occasions so far. She was drug free on both occasions but her behaviour could flare up if put under pressure by staff as Elizabeth was adjusting to new surroundings. Elizabeth was immediately encouraged to participate but not everyone understood that she was not feeling very well – she was complaining of physical/chronic pain and she was not given time to settle down and do things gradually in her own time and this is why it failed. She needed time to adjust to new surroundings after weeks on various acute wards that had further traumatised her and should never have been rushed. She could overhear staff members conversations to the effect they did not think she was doing well -and felt under pressure knowing she was on a month’s trial. She did not wish to attend meetings which her care coordinator (known to our family since the 2014 court of protection case) tried to arrange so soon after arrival. Pressure such as this triggered her behaviour and she acted in frustration and they have a zero tolerance policy and staff will threaten to call police unlike the private professionals we provided who could deal with any situations by talking therapy. However, there was one outstanding support worker who had quality in knowing how to deal with such situations and understanding when to stand back and give space. Even if someone has loads of qualifications sometimes they lack insight. I am astonished at some of the things the care coordinator has written, especially in the safeguarding minutes which I have. A care plan she produced omitted huge chunks of information and only “paranoid schizophrenia” was stated as diagnosis, totally disregarding other doctor’s professional reports and opinions which I have. I would therefore regard this care plan as being wholly inaccurate.
I would like to correct recent wrong allegations/accusations that I did not request medication being stopped recently. I was far from happy to learn that an addictive drug such as Lorazepam was being offered at regular intervals several times a day at this scheme by care support workers. This drug should only have been given as and when required. This was another reason why Elizabeth was getting upset. Elizabeth was allowed to stay drug free on the NHS wards at her own request but she was in the wrong environment and able to witness the horrific things that go on to other patients on these wards. It can take five years to recover off psychiatric drugs so I have heard. It might have worked out for her if she had been placed in a peaceful natural environment not an acute ward or a scheme where she was being put under pressure and no one understood that she was experiencing chronic pain. There is not enough knowledge by doctors on withdrawal and the side-effects of this, misinterpreted as symptoms of “illness” so I am delighted that Dr Joanna Moncrieff is doing research into this right now.
I am now told by Elizabeth that her care coordinator thinks she would benefit from a longer spell in a psychiatric hospital. What does she mean! I would state that she is a “prescribing nurse” – who has very strong conflicting opinions against that of several doctors who all state that acute/PICU wards are the wrong environment. A prescribing nurse/care coordinator knows seems to know better than any doctors in my area to come out with opinions like this which I would say is very wrong. There seems to be such huge divide in opinion by various professionals as to what is right or wrong for Elizabeth who have been involved in Elizabeth’s care or asked to report on same for expert opinion. I would say environment is one of the most important factors. A peaceful natural environment is best. I feel The reason things did not work out for Elizabeth is that she should have been given time alone to settle before being pressurised to attend meetings. Things like monitoring progress and procedures should wait until someone settles down first and not enough consideration was given in this respect.
I have just spoken to Elizabeth and told her that I am busy writing my blog which she knows all about. Elizabeth has written herself on this and if she feels up to it I will go through her wonderful notes on Australia later and we will produce the second part of “My wonderful Care” To recap the first account of the wonderful care we provided was all about Scotland France and Spain and Elizabeth has kept a diary of her time in Australia too and Elizabeth likes writing. Elizabeth could not wait to get away on holiday to Scotland and liked it so much that she wanted to stay longer and nothing could have persuaded Elizabeth to stay longer if she was not enjoying her time away. She was with mental health professionals who had outstanding unique ways of dealing with trauma and used therapy instead of mind altering chemicals. Pity we do not have care like this within the mainstream system. Elizabeth said there was not enough talking therapy and something needs to be done about this as if less money was spent on the private sector then there would be more money available to spend to improve local care and I think a complete change needs to be made as there is so much wrong with the current system.
I am so pleased that Elizabeth’s progress is good as she has been through enormous ordeal and I put this down to the fact that she has learned a lot during her time away through http://www.working-to-recovery. Now she has happy memories to look back on unlike before. Anyway yesterday we had a good day out. I had to take my car to the garage first as having just had it serviced there was a problem but after this, we went out for dinner and did some shopping. Whilst out, we talked about the scheme in the community. I just said to Elizabeth that surely this is better than where she is now on an acute ward and she agreed and only hope she settles without the pressure from certain members of staff to attend meetings. I feel that Elizabeth has had a horrific time being sent from one shocking “hospital” to another (some that are more like prisons) at least she would not be quite so restricted. There are good amenities nearby to her scheme that she could join things and go out on her own so there are lots more options. There are facilities such as gyms, doctors/dentist, physiotherapists all close by – with good transport to get to areas further afield. When she is confident enough she could meet me after work in London as the scheme is not far from a tube station. The most crucial thing of all is how staff deal with Elizabeth and how she responds but I have said to her that if she is unhappy there are plenty of other options and she go out to get away from things. They need to give her a front door key as it is not good when you cannot get back into your home and have to rely on staff to open the door. Right now on Suffolk Ward even getting off the ward is a problem with some staff making an issue. Some staff are of the opinion that Elizabeth is not allowed out to see me at all like before. They are either not informed or do not read the Rio notes properly. I have come across treatment at Cambian and the Bethlem where staff tried to restrict contact between myself and Elizabeth – Cambian even gave supervised phone calls and tried to make out it was Elizabeth’s idea which was untrue. On Suffolk ward they try to make out that Elizabeth does not want me to have any information – this is not true either. They achieve this by having her in first at meetings amongst the staff and then I was called in separately but when I asked if Elizabeth could come in and join the meeting with myself staff quickly spoke for her and made an excuse. It is pretty obvious that it is the professionals who do not want me to have any information and not Elizabeth. Even with an advocate present this means nothing when surrounded by 6 staff, several of whom are doctors. I think it is undignified treatment when someone encounters problems in coming off the ward and also when a member of staff refuses to disclose the basic of information such as where Elizabeth had been transferred to stating it “confidential” – I was at the time the Nearest Relative too so they did not wish me to know. It was Elizabeth who told me she had been sent to “Huntercombe” in Roehampton and she was having to use the hospital phone as they had confiscated her camera phone. Now they have gone and lost this camera phone and I made a big fuss about this phone being taken away from her and I am still waiting to get it back and it would now appear they have lost it. Huntercombe have corresponded to the effect that Elizabeth has signed for all her possessions but I was there on her arrival back to Chase Farm and that phone was missing and now I want the phone replaced as it is only fair that Huntercombe replace it. I will let you know how I get on as I think they are trying to get out of this by arguing. It is a matter of principal in my opinion.
Getting on and off a ward can take some time especially as there is not enough staff sometimes to deal with things. A patient might be stuck outside their offices for a long time whilst staff are too busy in that office to deal with them. Anyway eventually Elizabeth came off the ward yesterday and we could go out.
Whilst out Elizabeth enjoyed her time with me to the point that she said she would like to ask for more leave than just two hours a day. In fact we were out much longer as I had trouble with my car but no one was chasing to see where we were.
The other thing that is evident is that staff like to put patients down and do not encourage them. It is different from the care we provided in Scotland, France, Spain and Australia by “Working to Recovery” . What a fantastic job they did. In contrast when you look at the remarks by doctors, care coordinators, social workers and psychologists/nurses under mainstream care there are very few nice and positive remarks. There is nothing nice said about me as you can all imagine. As regards Elizabeth they paint a bleak picture of someone who is complex and make that person out to be far worse and say things that are completely wrong/inaccurate. Past history needs correcting – I told the team this many times. I hope you are all reading this team! I have re-written an accurate account of past history in “Summary of Care” This needs to be included in the Rio Notes. If you do not make necessary adjustments mistakes can occur in treatment. I need confirmation that this is done. Please can someone from the team confirm to me that you have amended “Past History”.
Private MH professionals saw no sign of psychosis during Elizabeth’s stay with her and recognised there could be a learning disability but there is contradiction in comments by certain professionals. I can understand why Elizabeth does not like meetings – words can be twisted and the result is minutes and reports are inaccurate and need to be corrected. The team can wrongly document or have misunderstand from a communication point of view as seen from the certain minutes and file notes. This is a ward specialising in MH problems not complex PTSD or Aspergers so this is where the problem lies. Before meetings in the community take place, Elizabeth should have an independent advocate present at all times but I think that it is ineffective when the advocate comes in to a meeting and opinions are sought from Elizabeth. I think that the Advocate should have discussed opinions first and then to be sure Elizabeth should be invited into a meeting with me and others afterwards. It is against the Code of Practice of the Council and Trust not to provide an advocate and this is extremely wrong. I have quite rightly had to complain about this and I look forward to seeing that changes have been implemented after the last safeguarding meetings. It is wrong that every email and correspondence from me is to referred to the Deputy Leader of Quality who also chooses not to respond playing on confidentiality with the excuse of “resourcing” that they must think of saving money but this is laughable when you think what huge money is being spent her night after night on an acute ward c£900 per night and then Huntercombe and two Cygnets it strikes me that there is huge money in the local area so what is the cost of a response to my email in comparison? The truth always comes out in the end no matter how much you play on confidentiality and Elizabeth is keen to discuss. Elizabeth’s wish is that I “do something to change the rotten system” but I do not know where to begin – it is a mammoth task that should be tackled right at the top at Government level. Well I am only too happy to document what is wrong with the current system – EVERYTHING! and what changes should be made.
I will end my blog to say IF ONLY THERE WAS OPEN DIALOGUE – IF ONLY WE COULD HAVE BEEN TRANSFERRED TO DIALOGUE FIRST – why does my local area not move with the times? – there would not be this problem of “resourcing” as I would not have any complaints for them to answer. There would be proper communication unlike at present.
Message to the Team
If I was employed in Quality the first thing I would do is to make things open and honest and give an option to everyone as to whether they wished to be involved with Open Dialogue. When we did Open Dialogue at ISPS I was impressed by professionals from other areas and Elizabeth did most of the talking all about when we were taken to court in 2014. I must join again as they have some good events and this one was held at Leicester University. I did not see anyone from my local area there yet there were social workers and professionals, including psychiatrists from other areas and it is a shame that Enfield is behind the times. Thank God there are doctors such as Dr Russell Rassaque and Dr Moncrieff who are not afraid of change. We met the criteria for Dialogue First on Elizabeth’s return from Australia but our request was denied and I would like to know why? At ISPS regardless of whether you are a service user, a carer, an alternative practitioner, Doctor, social worker, nurse or any other professional everyone got treated the same and there were no barriers. Why is this not the case locally? Why aren’t carer’s and service users listened to and treated like they are nothing/invisible? If a carer or service user dares to complain why are they treated with such contempt and why is there so much bullying against anyone who they should be working with and not against. No, it is not impossible for me to work with professionals – it is the professionals who do not work with me. I would quote Dr Bob Johnson – “truth trust and consent” and I would recommend the team read his book called “Emotional Health” and also “Images of Trauma by Professor David Healy.
Last of all Elizabeth said yesterday she would like more than just 2 hours leave and I hope that this can be accommodated – it is wrong to assume that Elizabeth could ever be forced to doing anything she did not wish to do as she has a mind of her own.
Outings at the weekends should be provided to those patients who wish to go out and are stuck on sections, many of whom are of no risk to self or others. There is nothing to do at the weekends and I believe that these things would benefit the patients who would then have something to look forward to.
I wish that everyone could come along to the last of all fabulous summer camps run by http://www.working-to-recovery – if anyone is going I look forward to meeting you and there are professionals, service users, carers all attending, some from abroad. A different approach is needed throughout the UK – more therapy and more holistic care and emphasis on nutrition and proper assessments.