My daughter Elizabeth is now on her second week at Suffolk Ward, Chase Farm Hospital, Enfield. She had been doing OK in the community, despite the most dreadful conditions at one scheme after another she was left to cope with without any psychological help.
Elizabeth has psychological problems going way back as she was in the first instance abused (not family related). The answer is clearly not drugs as they do not work for someone that has PTSD. The problems began when Elizabeth was prescribed Prozac by her GP and that was the first time we ever saw aggression. Elizabeth would throw things in frustration and when she was withdrawing from the Prozac 30mg a day she took herself off in one go and we had glasses, plants, crockery being thrown around at home so I took Elizabeth to Barnet Hospital as she was withdrawing from this awful drug and what I hoped was that counselling, and something to help calm her down could be given as she was beyond the stage of reason and I was hoping to bring her home but she had flared up in public and police took her away and she ended up on the ward at Edgware. Whilst I worked part time then, Elizabeth was not in a fit state to work and was alone at home all day and seemed unhappy. She had been on a waiting list for activities at Day Hospital, Chase Farm Hospital Enfield.
This was the start of worse to come – even way back then what was on offer under Enfield was virtually nothing. When eventually Elizabeth got a place at the Day Hospital I noticed that activities were cut when staff off sick and mostly saw outpatients sitting around socialising amongst themselves with nothing to do.
One day another person came to socialise amongst the day patients. Elizabeth it would appear had a new “boyfriend”. This boyfriend was much older than Elizabeth who by this time was given a label of Schizophrenia and was on the second Antipsychotic Aripiprazole which again had no effect – in fact I noticed this awful drug seemed to make her worse. She had difficulty swallowing. Every meal she was ill and I thought this drug was making her suffer from an eating disorder. I was told this drug Aripiprazole was better than others because the last one, Risperidone left Elizabeth with an allergic rash so the next was produced. I was most concerned with the way this Aripiprazole was affecting Elizabeth and I thought she had Bulimia like never before.
Anyway, Elizabeth was seen by a member of the PALs team leaving the Day Centre Chase Farm Hospital with this new boyfriend but no one stopped her. Elizabeth was voluntary and she was at the time living at home. That led to Elizabeth going missing and being voluntary who cares. The response was that because she was voluntary and an adult she had a right to come and go as she liked. Sometimes I would sit amongst the patients in the foyer – I would listen and join in with their conversations. I complained that groups were cut and that there was nothing much for them to do. I was sorry to hear that so little was on offer in my local area. Anyway when Elizabeth went missing I received call after call throughout the night demanding money of about £100 for her safe return. So against Police advice I decided to go along with this ransom money. Elizabeth was not in good company – she was with a patient from one of the wards who was described as “one of the worst”. He had promised Elizabeth a day out at the coast. I offered to meet him to give him the money for the safe return of my daughter as no one seemed to be doing anything to find her and I was up all night taking calls from this patient. Then suddenly the calls ceased and that was the most worrying time of all because I waiting to hear where I could meet him. The next day I went into work – I just didn’t know where to start looking for Elizabeth and neither did the Police. We thought she was by the coast somewhere. She was found wandering the grounds of Chase Farm Hospital the next day with ripped trousers in a daze and I got a call whilst at work right at the end of the day so I went straight to the hospital. I was told by a member of staff that when found she looked OK “no harm done” – I thought that was a strange comment and based on assumption. How can anyone comment in this way – how would they possibly know? Elizabeth did not speak. She was sleeping and I stayed with her all night whilst we waited for the forensic doctor to arrive. The other patient described as a predative male was on a criminal charge – described as one of the worst, but now had been returned to the ward. To this day Elizabeth has not spoken about what happened but I felt the hospital was negligent as she was seen leaving with a patient who apparently should have been escorted everywhere. Elizabeth was promised a nice day out at the coast but instead ended up in a dingy hotel and I don’t want to think about the rest – she was dreadfully abused and none of this would have happened if there was proper supervision and activities provided. Because of this I did not like her going to the Day Hospital any more but the problem was there was nothing to do in the community either – no support and when you work, you are not there during the day to supervise or help. Elizabeth was around 19 but needed support to go out and do things. There was nothing in my local area of Enfield. I would try and encourage her to go out, to look for a voluntary job etc, to join other groups in the community not mental health related because I felt her to be vulnerable to predatory men as Elizabeth was slim and attractive looking and it was a constant worry. I was called over-protective but all the time I was concerned due to what happened at the day hospital and that something similar could occur. My concerns were later recognised as far from unfounded.
So when I listened to other patients’ stories about being on the wards I was horrified and thought I am glad Elizabeth is not on the wards but I noticed the prescription level of these drugs being increased and I had also seen the effects of withdrawal twice at home which I could not cope with – this was not a psychotic incident due to illness – this was full drug withdrawal and the effects of drug withdrawal from extremely powerful medication and try doing that at home. Things were broken and there was risk of injury – her withdrawal from Aripiprazole was even worse than that from Prozac. She withdrew from 10mg of Aripiprazole.
With increased decline in behaviour due to steep drug withdrawal and violence aggression, resulting in things being thrown around at home/broken especially if this behaviour continues in the community this can lead to arrest and incarceration. All I wanted for Elizabeth was counselling, not drugs and because she had such bad reaction to the drugs I was supportive in her not being on them but I was blamed as the instigator encouraging Elizabeth to stop taking the drugs. It was Elizabeth who wanted to come off the drugs yet this could have been done if there had been proper facilities and supervision but there is nowhere in the UK that provides this kind of facility. The more I heard about the terrible pain and side effects she was suffering from this medication the more I felt this treatment was wrong.
So the first scheme in the community was Moti Villa. This is based in the local area of Enfield in a very nice area – The Ridgeway. I was glad for Elizabeth to be discharged from Somerset Villa Chase Farm Hospital where there had been yet another serious incident on the ward I got to hear about.
I thought the studio flat was nice, I thought the care support worker was nice too. I was pleased the house, shared by others was in a nice area and I liked one of the residents too. The team behind Elizabeth at the time was Enfield Community Rehab. Everything started well but then things went from bad to worse. The nice support worker left and things were not the same afterwards. I didn’t want her to go to a MH scheme as it had been noted previously that Elizabeth had Aspergers when she took herself off Prozac and ended up at Edgware Hospital. So staff slept through the night at Moti Villa and no one was supervising who came in and out of the building. Elizabeth was also on huge levels of drugs which affected her ability to clean and look after the flat and most certainly would have affected her capacity to stop what happened there. When I used to visit I would wash up, tidy up etc. We used to have Elizabeth round at the weekend but her behaviour on nearly 800mg Quetiapine was volatile and she once nearly kicked a door off the hinge so we felt there was no other solution at the time as I had others to consider at home. Little did I know that Elizabeth had been so badly abused at this scheme because she couldn’t speak about it being on such a huge level of drugs. I tried to find myself a job where I could work at night and be with Elizabeth during the day. I tried to get into security work did courses and past exams but then I thought about the Police. At the time Elizabeth was at Moti Villa I was on the Police training course at Hendon and one evening I came to visit only to see that Elizabeth was being questioned by the Sapphire and Drugs Squad. All her possessions had gone missing but I was told Elizabeth had invited strangers she had met on a bus to her flat and lent the possessions out which she did not get back. None of this is true and Elizabeth being so drugged up at the time could not talk about what happened effectively. Now we know everything. According to files Police could not find the CCTV – I think that no one could be bothered as what kind of witness would Elizabeth have made in a court and whilst safeguarding took place I honestly think that the main concern was towards the 14 year old drug pusher who was on the premises as Elizabeth who was only 20, like a child herself was not recognised as anything other than an adult said to have had full capacity. Its funny how they say someone has capacity when it suits them. Here was a major incident that happened on premises in a very nice area of Enfield and I quite rightly was far from happy and was becoming more and more outspoken. What led to me being banned from Moti Villa was the fact that Elizabeth told me about an email she had written and wanted a copy of it. I went up to the office and insisted that Elizabeth was given a copy. The email requested a reduction and to come off medication which they did not want me to see. I was described as being rude and aggressive by insisting she had a copy. When I called to visit Elizabeth one evening at Moti Villa I had not received the letter stating I was banned from visiting and came into the building with a friend to visit Elizabeth who had contacted me and asked me to come. Elizabeth was volatile and unstable because she was upset that she could not have visitors at “her home”. Police were called by staff and I was told politely to leave the premises which I did but Elizabeth flared up and threw a glass bowl in the hallway. After that I had to visit Elizabeth sitting in my car outside and she would come out in her dressing gown to see me. It was only in 2016 we all got to hear the dreadful story of what happened in depth at Moti Villa going back to 2010. This was explain 100% the behaviour of my daughter Elizabeth and the frequent admissions to the ward. Social worker AMHP DM who was later to be the nominated NR in yet another attempt to get rid of me was assigned to answer the PHSO’s investigation and one of the things she had put was that the frequent admissions were as a result of the mother interfering – there was no mention of the bad things that had happened to my daughter at the scheme and no admission that things had gone dreadfully wrong at this scheme and I started to pressurise for Elizabeth to be moved into a little flat in a road virtually opposite where I lived, so she could live independently but be closer to the family home. I used to take the residents to a running club, liked the staff, was impressed that these people were being integrated into society unlike MH and I wanted Elizabeth to be with this other team but that was ruled out when she was given an assessment which pointed at mental health not learning/developmental/Aspergers. Since then there have been about 4 or 5 disputes with diagnosis that dispute schizophrenia the most recent being Huntercombe who took Elizabeth to one side and said “you have high spectrum aspergers”. It is insulting to read that the current mental health team say low intelligence and personality disorder and paranoid schizophrenia. It is totally wrong and what has let Elizabeth down is the fact that this team have not provided the right kind of support in the community needed. They have instead centred on spending vast sums of public money in taking me to court time and time again to get rid of me as the Nearest Relative – the most recent was to displace me with the Local Authority’s own Nearest Relative DM. When I saw who this was going back to Moti Villa I decided to represent myself in court which I did. Temporarily I was displaced because I was given the wrong court details and ended up missing the proceedings which took place in another court within Royal Courts of Justice. I was given virtually no time to get up there either. Previously, I was taken to Court of Protection to force return Elizabeth to a care home Phoenix House Stepping Stones rated good by the CQC in Northampton – transferred from Cambian Wales. I was suspicious as I could not get through on the phone to talk to Elizabeth at this dreadful place then they refused to let me have the Clozapine when I offered to go and pick it up. We then had to endure bullying by community social services – ENFIELD COMMUNITY REHAB. Elizabeth was not on a CTO and wanted to stay at home and even if she was on a CTO I would not have returned her as she had no food at the weekend at Phoenix House care home. The fact was Elizabeth was upset at pressure being put on her to choose between Mum and Dad. Elizabeth chose to stay at home but no one wanted to help me get the chemical Clozapine. My story “Get Her Back We Are Paying for that” relates. Court of Protection slated Enfield Council and I was allowed to keep Elizabeth and during those two years without any support other than through friends and family Elizabeth began to reveal more and more especially when I reduced the Clozapine due to the fact that Elizabeth was complaining of loss of control of her tongue (Neurolepotic Malignant Syndrome) and again had difficulty in swallowing. I saw at first hand the effects of this awful drug and had to make special arrangements for someone to pick up the blood packs and sit with Elizabeth for hours in waiting rooms for the blood test. Elizabeth was on next to nothing of this chemical down from 350mg and the zapping in her head had stopped because I had changed her diet with the help of someone who went out of his way and had extensive knowledge on nutrition. I remembered what the private orthomolecular psychiatrist I appointed said at Moti Villa “this is the wrong environment to come off the drugs” – how very right he was but home was the correct environment but it was not easy and I managed to juggle the reductions with my job. Everything was going was well until Elizabeth developed a bad cough and then I sought private help. I had spotted a farm house in Kent that offered support in terms of rehab so although it was about £10000 per week I thought that this would get Elizabeth through the worse of the withdrawal for a few weeks with proper counselling and support that I could not offer myself at home but unfortunately, waiting around for ages to be assessed for this private facility led to Elizabeth flaring up and to my horror we were then in the back of an ambulance heading for an NHS hospital which is not what I had planned. This also led to Elizabeth being admitted to a Cygnet Hospital – one of the worst I had ever seen – The cygnet hospital would have been ideal with Elizabeth to withdraw from the drugs but in these institutions it is all about drugging to the hilt. I managed to get her out of there but they had doubled the drug Aripiprazole and she was unstable when she came out. There was no one to turn to in the community as like I say the top priority of ENFIELD COMMUNITY REHAB has been the displacement of me as the Nearest Relative at a cost of thousands of pounds of public money.
CARE IN THE COMMUNITY UNDER ENFIELD COUNCIL AND ENFIELD COMMUNITY REHAB
What has let Elizabeth down most of all has been lack of care and support in the community and a team who cut you out as a mother because they do not like you.
Before the recent admission to hospital Elizabeth was able to venture out and use a bank card, cook, clean and she was starting to go even further afield, even come up to see me after work one evening on her own. She was back living at home and had been assessed for a council place because she is now 32 and it was not easy having Elizabeth at home. She was crying out for counselling and therapy but the hospital clinical psychologist Dr M said no to this and how very wrong she was. Elizabeth resorted to trying to find her own counselling and visiting churches, phoning my friends and Samaritans etc. Suddenly a wonderful opportunity had come up. A friend of mine – a former qualified mental health nurse was keen to live in the local area to be near to her son and whilst Elizabeth had been assessed for a one bedroom flat I asked if it was possible for a two bedroom flat to be provided so that Elizabeth could live with this friend. Every night I came home from work to see Elizabeth happy and there was laughter in the house. There is only me in the family who is being supportive no matter what yet social services Enfield constantly sought to displace me with the next person deemed to be closest relative. Unfortunately, this person has not been supportive and did not want to help when it came to the wonderful private care I provided in Australia or anything else come to that. When someone behaves in a way that is negative and reacts in a way that is not right for society, I personally believe you should not turn your back as a family but this is how people can end up on the street because there is also nothing provided in the community as vast sums of money are spent in the wrong direction and I believe if only there was open dialogue in Enfield, inclusion and listening instead of dictating then this is the only solution to improve matters in this Borough. Leading up to Xmas Elizabeth went downhill to the point that temporary accommodation was provided. On New Years Day I tried to bring the family together again with a view to having Elizabeth back home but she behaved in such a way that it was her wishing to go back to the scheme. She refused to sit round the table to discuss things etc. It was heartbreaking as I made a lot of effort to try and get things right but part of the reason was that nothing was progressing with the housing situation for Elizabeth with no help being provided by ENFIELD COMMUNITY REHAB at the time. There was also a mix up with the pin number and then I tried to go for what I thought would be a great solution when someone I knew, a former MH nurse wanted to move in with Elizabeth. This was immediately brushed aside by ENFIELD COMMUNITY REHAB. So I started to complain and copy in loads of people including the leader of the council to try and get things moving with the housing. To date, we still have a wardrobe, chest of drawers and most of Elizabeth’s possessions at home. At the scheme in Wood Green are yet more possessions so just like in Reservoir House where there were bed bugs possessions all over the place. Nothing moving, no help to get a permanent place of her own. For someone with autism it is not very nice to have possessions all over the place and it is like my father with Alzheimers – familiarity is important not changes and having things in good order but how can this be when Elizabeth was distressed at not being able to find her possessions etc that are all over the place. Living at home, Elizabeth would get upset it anyone moved her possessions and she could not find things. She was also in need of counselling and I tried to listen to her – sometimes she would come and ask to speak to me throughout the night too and would get up the next day for work feeling awful. We have had no support in the local area of ENFIELD for many years and as a mother I have tried to look at all solutions and have spent a lot of money only to prove that with the right care – therapy someone can get well.
The only place Elizabeth has been short listed for was a one bedroom flat in a block housing dementia suffers and those with chronic illness.
There has been no other bidding or any help or support in my local area to get her housed quickly. Now she is back on Chase Farm Suffolk Ward still under the same team as ENFIELD COMMUNITY REHAB.
LEADING UP TO SUFFOLK WARD
Suffolk is an acute locked ward but in no way compares with some of the shocking private prisons such as Cygnet and Huntercombe which were dreadful places to be and a patient could only have a tray of possessions. At least Elizabeth can have her phone. She was allowed out on her own at first but that has stopped because Elizabeth has not only tried to run away from her scheme in the community where she had a tiny room at the top of a house – no proper kitchen facility and no lounge facility. Elizabeth had found a new friend. She is 32 and who can blame Elizabeth for wanting to go out and enjoy herself and not be ordered under CTO to have to see a team who should have by now got her moved into accommodation. The temporary scheme must be costing about £450 per week and is now empty apart from her possessions which I hope will not be thrown out. Elizabeth had been missing for about 4 days from the scheme before I was notified. I knew she was not alone and with a friend and I was not too concerned apart from the fact she should have been bidding for properties. Elizabeth had gone to the coast for a holiday with her new friend but just prior to this, I could see Elizabeth was throwing things out of frustration and was not happy – with nothing to do – no activities or support she was going downhill. When I asked where her personal budget was going I was told this was being spent on the temporary accommodation that give in-house support but what Elizabeth needed was support in the community and not only that, to be with others who could understand her and communicate with her. She is under a mental health team who do not possess the skills of say Baroness Hollins in terms of communication. In other words Elizabeth felt that no one understood her or were listening to her and wanted to get away and mentioned that she wanted a new team that understood Aspergers. Elizabeth came back briefly and went away again with this friend but this time stayed with a relative and that did not work out.
PROBLEMS NOT ADDRESSED
Elizabeth has developed a deep hatred towards men. It has been men who have abused her which has brought her under MH care in the first place, combined with prescribed drugs which have done nothing for her. Sadly, all that was needed and not provided was counselling but of the right kind and this was not given on discharge or even recommended by Suffolk Ward’s clinical psychologist Dr M.
SUFFOLK WARD TO DATE
Elizabeth has recently resorted to throwing things around in frustration and this has led to her admission to Suffolk Ward especially since she is not at home now.
The care on offer on Suffolk Ward is mainly drugs and if drugs are refused, injections. If anyone acts up on the ward they are injected or put into the seclusion room sometimes the seclusion room is used all day and all night for one patient.
Because Elizabeth tried to run away she is not allowed out on her own now.
I can take her out escorted and yesterday I took both her and her new friend out for drive in my car. It was the first time I had met the new friend. I had the roof down on my car and took them out for lunch and coffee and cakes in a very nice place. Today I am debating what to do as without me Elizabeth would be stuck like a prisoner on the ward all day long. Again I will offer to take her out with her friend off the ward for a few hours. It is Bank Holiday weekend so tomorrow I will do the same as there is nothing to do on the ward at the weekend.
I am disappointed that Elizabeth has so far been injected twice and is suffering twitching of eyes and arm plus stomach pains – probably tardive dyskinesia as a result of these injections. I have yet to hear what she was injected with and hope it was not highly dangerous Haloperidal. Yesterday I was told the medication was only prn Lorazepam but this is a highly addictive drug and my concerns are now that unless ENFIELD COUNCIL step in to help Elizabeth will be stuck on the ward a very long time simply because of her housing situation and being stuck on the ward for a long time will lead to further decline and ENFIELD COUNCIL MUST NOW GET THEIR ACT TOGETHER AND DO SOMETHING TO HELP MY DAUGHTER WHO WAS TERRIBLY ABUSED UNDER THEIR CARE LEADING TO DECLINE IN HER CONDITION. IT IS ENFIELD COUNCIL WHO HAVE SPENT A FORTUNE ON PUBLIC MONEY IN THE WRONG DIRECTION AND NOW I WANT SOMETHING DONE ABOUT IT BECAUSE I AM APALLED AT THE TREATMENT OF MY DAUGHTER UNDER ENFIELD COUNCIL AND UNDER ENFIELD BARNET AND HARINGEY MENTAL HEALTH TRUST.