Elizabeth has not long since moved into a new flat. It’s local and close us. It is a lovely flat and in an area that is familiar to Elizabeth.
Elizabeth was recently released from Section 3, prior to that a CTO where she was under the team of Enfield Community Rehab but the system of forcing people to engage is wrong and not “care” in my opinion. Both CTO and S17 leave and underlying terms were completely ineffective with Elizabeth and waste of time and money. It was used like a form of punishment ie “if you don’t do what we say you will end up back in hospital”.
Moving to a new flat was never going to be easy for Elizabeth and has been complicated by a friendship she made through the local mental health resource centre where people like Elizabeth are encouraged to go and engage with services but not everyone wishes to engage which could well be due to lack of trust.
What should be provided is assistance in respect of integration into society and people under mental health care become isolated to the point they just go downhill. There seems to be no care in the community. What is provided all too often is substandard accommodation provided by private landlords with “care” provided by untrained support workers who dish out medication. When it comes to a case like Elizabeth who suffers from complex PTSD and attachment issues it is not untrained support workers that Elizabeth should be working with but qualified experienced professionals offering psychotherapy.
Elizabeth had a dreadful time under section 3 at Chase Farm Hospital Enfield (Suffolk Ward) where main care provided is “medication”. She was given frequent lorazepam injections on the ward due to becoming distressed. Not once was Elizabeth referred for an MRI scan or receive any referrals for physical health. At a recent tribunal it was suggested she had assessments on hormone imbalance which I believe most certainly is an underlying cause or perhaps a damaged Thymus but nothing has been done. I’ve already proven there are other issues that are underlying such as endocrine disorder having spent £1000 on tests privately. Physical health under Enfield is ignored in favour of a mental health diagnosis as this is the easy way out.
Elizabeth was discharged into an unfinished/partially furnished flat in the community. The bed was not even properly assembled. I had arranged for her possessions to be delivered to the new address which is a beautiful one bedroom flat in a block. The flat looked fabulous once carpets were laid. I bought a Chinese rug. I spent a lot of time and money bringing together Elizabeth’s possessions for the first time as these were all over the place because there was nowhere to put such possessions. All Elizabeth had been offered previously was one room in a shared house full of others suffering from MH problems. The most recent scheme did not even have a proper kitchen or lounge to sit down and watch TV and was situated in Wood Green, a fair distance away. Elizabeth was unhappy there. Prior to that, a bed bug infested scheme called Reservoir House situated in a nice area of Oakwood and they tried to blame Elizabeth for bringing in the bed bugs. Prior to that, Mays Cottage – one small room in a shared house, whose Landlords were Inclusion Housing and the “care” provided by Craegmoor (part of the Priory Group). Care consisted of support workers that stayed upstairs in an office. I have on several occasions taken Elizabeth away from care and had her at home but there have been issues with other family members and I could not sleep because Elizabeth needed someone to talk to and kept coming in and out to discuss her confusion which is always the same thing “who am I, what am I, why am I here. This is the outcome of so many years of being prescribed powerful mind altering chemicals that have done nothing to help Elizabeth.
I do not think the bulk of supported housing/living schemes are adequate or understanding towards someone like Elizabeth. Vulnerable people are just dumped together in such schemes that have complex problems and they are not integrated into society leaving them isolated which is so very wrong.
Now for the first time Elizabeth has a lovely flat. This is the first accommodation that is comfortable, not shared with others resulting in possessions going missing and with Elizabeth having to share accommodation with untrained support workers, not all of whom knew how to communicate with her. The first thing they do when someone is distressed is to call the Police and then that person once again ends up sectioned, on a ward where brutal treatment goes on adding further to the trauma of that person.
On Suffolk Ward Chase Farm Hospital, there were daily injections of Lorazepam to the point I called the CQC. When I heard of this treatment and how it was affecting Elizabeth this I tried my best to get the flat up and running without support from Enfield Community Rehab. I spent my lunch hours trying to sort out benefits in order to obtain Housing Benefit which you can only get if you qualify for if you get Severe Disability Premium but this was not easy to obtain as you could not get through on the phones. Then having to deal with endless email correspondence and be assessed for the council tax payments of which a portion goes to social care. None of this has been easy to get in place.
So carpets were laid, possessions delivered. I’d given Elizabeth her bed from home. I bought a small table and two chairs for her balcony. I bought pigeon netting as the balcony, despite being cleaned by the Council, had become filthy with pigeons nesting. I then had to clean the balcony myself as re-cleaning refused. I then had to sort out the electricity supply and had trouble getting hot water up and running. There was no cooker -despite Enfield Community Rehab stating a grant had been applied absolutely nothing was provided for Elizabeth and when I recently that I should expect nothing to be provided. So I have had to purchase essential things for the flat myself such as cooker and I recently bought from a company called Made.com a nice sofa bed so that other members of the family who have moved away can come and stay.
So far, only Elizabeth’s sister has been to visit the flat briefly when she came down for my Birthday.
The next essential appliance is a washing machine which I will get next month as it has been expensive to provide all of this myself without any assistance. She already has a fridge but I want to get a fridge freezer also. I also would like to make the balcony look beautiful like a little garden with artificial grass and plants. I bought some paint yesterday to paint the balcony.
Elizabeth’s is in distress:
Despite the lovely flat, Elizabeth has been in distress lately. She has nothing provided in care by ENFIELD COMMUNITY REHAB – a mental health team whose emphasis has been on court action in the matters concerning displacement of me as Nearest Relative.
Encouraged to attend the mental health resource centre at Park Avenue Elizabeth made a new friend there. The two friends kept going missing all the time. It didn’t matter whether Elizabeth was on CTO or even on Section 17 leave. Neither were happy in their temporary schemes so I was so happy when Elizabeth finally won a bid for the one bedroom council flat of which she had been assessed months ago however by this time Elizabeth had gone downhill due to being in temporary accommodation where she was unhappy. Elizabeth’s friend also moved locally to a MH scheme where emphasis was on “medication” and she was not happy there. This friend was spending more and more time at the flat both kept stopping medication and Elizabeth has now been off the drugs for quite some time. These friends seemed to be looking after one another and supporting, or trying to support, one another but both had complex issues. Without guidance or assistance such friendship can end up being destructive and, unfortunately, when things are not going well with the friendship Elizabeth has gone downhill. To act as a “carer” for someone else when that person has complex PTSD and has issues of their own is not an easy thing and when faced with additional physical disabilities such as for instance epilepsy this is not a good situation.
Yesterday, I went round to visit Elizabeth who was on her alone at the flat. She was not happy and I gathered that things were not going well with regard to her friendship. Because Elizabeth had been constantly attending A&E because of her friend crying out for attention to physical health this led to one/both being sectioned.
I despair, as now, only yesterday, Elizabeth’s front door was been broken by Police who because of a phone call allegedly from Elizabeth stating she felt “half dead” but Elizabeth is autistic (though it was pointed out by care coordinator PM she had never had a formal diagnosis). I then pointed out that throughout the files it was consistently mentioned “learning/developmental disability” and there is a report by Dr Bob Johnson on complex PTSD totally dismissed by Enfield Community MH Rehab team leading to totally wrong treatment of psychiatric drugs. I visited Elizabeth’s flat yesterday because she needed a padlock to lock the front door. Yesterday there was drama. A family friend had gone round to the flat to assist for access for workmen to attend but Elizabeth then discovered that she had been locked in completely with a padlock secured to the front door. The care coordinator explained instructions were given to break down the door because of reports Elizabeth felt half dead when in actual fact she was not in but out with her friend. It is a shame the front door was broken down when spare keys to the flat were available locally with a family friend that could have been contacted to avoid this situation. The front door which has been badly damaged is another thing I have to sort out during the week. I might get a key box in order to avoid any reoccurrences. When Elizabeth says she feels half dead in actual fact this is not the case and dialling 111 should not have to mean an ambulance being called out when in fact all she needs is someone to talk to which is what I tried to do yesterday. I went round to her flat bringing plenty of food. I offered to take her for a drive in the country. I got the impression that Elizabeth had not slept well or had eaten anything. Not sleeping or eating is a trigger point. Elizabeth kept phoning to see where I was but I was sorting out the padlock and was in B&Q and when I arrived she was sounding distressed. It really is bad the way she has been discharged from hospital without a single thing in place.
Elizabeth has the best accommodation in terms of the flat she could ever wish for – not just a tiny room in a shared house full of other disturbed vulnerable people where possessions go missing and there is likelihood of her clashing with other people. She is very close by but I cannot be around every second and that is why I am so disappointed with care provided under Enfield and feel she is under the wrong team as it is not the first time that nothing whatsoever has been provided and all they do is drag her back to hospital time and time again and refused to give anything in the community. I have now turned to the GP as I feel Elizabeth’s physical health all along has been ignored especially when Elizabeth has called at A&E with joint pains, back pain and even her eyesight – blurred vision and pain which is not mental illness – this is what you get when you have been on psychiatric drugs for so many years and develop chronic pain then Doctors then try to prescribe another drug to counteract this. We all believe Elizabeth has chronic brain impairment caused by her treatment. Like never before Elizabeth suffers from anger issues whereas once she was pleasant, polite – a quiet person who had friends. Then along come a team of MH professionals who start writing in nasty terms about family background when these professionals do not see the full picture and do not communicate in a decent manner with the family.
Yesterday, after seeing Elizabeth I called to see the GP who is open Saturday and Sundays. They operate a service called “The Hub” but this service is like a skeleton service. It might sound good on the surface but it is not because a Doctor cannot access notes written by the regular team of Doctors so what good is this? I have told Elizabeth about The Hub and that it would be best for her to visit the local GP surgery than make calls to Police and 111. At least Elizabeth can talk to a properly trained doctor to address her anxiety about her physical health. This doctor made notes which will go to her regular GP. A service such as this should have full access to all the computer file records -something should be done about this. Just like the new Urgent Care Centre at the local hospital, replacement for what was once an A&E department, whilst it is a nice modern newly-built facility they are very limited to what they can do to help people and that means travelling a fair distance to another hospital which does have full facilities.
I have written several emails to Carlton House Surgery because Elizabeth is not getting basic care in the community and a lot of trust has been lost in mental health services. the local MH team which is (Enfield Community Rehab) are providing nothing and have refused direct payments on numerous occasions. Elizabeth wishes for her physical health to be examined thoroughly. She does not want to be drugged up once again on psychiatric drugs which do not work. Calling emergency services is a cry for help and Elizabeth is a product of NHS failure under MENTAL HEALTH CARE. So now I have requested a referral to another team ie HEADWAYS or similar that deal with chronic brain injury which is what we all feel she has. They provide support in the community. The GP should also look at her neglected physical health needs and examination of a cyst in her head that has been neglected for years, ignoring the recommendations of the recent Tribunal for hormonal tests. The last I heard that they were having another meeting but priority now needs to be given to correct assessments as having read the DSM no psychiatric labels should be given until a full and thorough physical test assessment is done. We cannot accept a MH diagnosis because in the first instance Elizabeth came under MH services because of Prozac induced psychosis caused by withdrawal of this highly dangerous drug which led to false label after false label.
I have requested countless times direct payments in order that I can provide what Elizabeth wants. At least she would have some care in place if I was arranging it like I did for my father with Alzheimers who had a good team of social workers who worked with not against the family as they have done under MH for Elizabeth. I had 24 hour care with my father in his own flat which benefitted him. This was better that ending up in a care home or any kind of hospital.
It is cheaper to provide a bit of support in the community than just keep admitting someone like Elizabeth to hospital and placing them on section after section when all along the community mental health teams are not providing what is necessary and where is the money going? I think the money is being wasted – a waste of money going on legal action and waste of professionals time in attending tribunal after tribunal when all that is needed is direct payments to provide a companion for someone like Elizabeth as she can do things for herself in the house and can go shopping but needs help with budgeting and especially help when it comes to forming friendships – someone to talk to and confide in and to gain valuable advice when it comes to friendship is what I feel is needed.
What would be good is for the students of around Elizabeth’s age to be involved – those studying for mental health nursing and psychology would be of more benefit than a “mainstream” psychiatrist. The answer is not to supply yet more drugs but to provide the very basics – the right kind of friendship that could give valuable guidance by other young people, not by a team who wish to push drug after drug which is clearly not the answer in Elizabeth’s case.