Elizabeth, at the age of c32, has been assessed in terms of having her own place to live but nothing appears to be moving forward.
The stress of Xmas had affected Elizabeth so badly and she has moved into this scheme which is meant to be temporary. What Elizabeth needs is not being provided in the community in terms of counselling. What is provided is 1.5mg Risperidone – drug previously found to be allergic to.
We tried to help Elizabeth having taken her away from previous care where she was living in appalling conditions whilst under CTO. Unfortunately I was not too happy this evening when I went to look properly at Elizabeth’s new scheme.
Its a mid-terraced house, housing c7 vulnerable women plus 1 support worker. Elizabeth believes that residents come from a different area -Tower Hamlets.
I gave staff a bit of background re Elizabeth who moved there just prior to Xmas. I told them there was conflict of opinion on diagnosis. Huntercombe Roehampton diagnosed high spectrum Aspergers. She already had a diagnosis of complex PTSD. However, we believe that Elizabeth has cbi (chronic brain injury). Having had extensive genetic tests done there is no way Elizabeth has got Schizophrenia.
Anyway, today I have had Elizabeth come over on her own. I had cooked dinner but Elizabeth was not happy as she was expecting to be taken out, so we went for a drive to a nice pub in the country as Elizabeth had not eaten anything at home. I bought her a meal at the pub and Elizabeth did not feel comfortable as it was busy inside. She hardly ate anything. Once home she proceeded to follow me everywhere in the house and you could not have a proper conversation with her. Elizabeth had also been to church previously on her own today.
I drove her back this evening and was interested to see more of the facility. I heard from Elizabeth there was no oven working and was concerned. I brought a two ring hot plate for the scheme that Elizabeth and others could use if they wished. I then spoke briefly to a member of staff and complained there was only a microwave to cook in. I had taken a small saucepan and small frying pan to the scheme and asked how do people cook there. Both microwave and the very small oven were not in the tiny kitchen but in the bedroom of the staff member which I thought was not good.
I also could not see any fire extinguishers or emergency exit signs. I could not see a fire extinguisher in the kitchen and looking at her tiny room I wondered- how on earth would Elizabeth get out if there was a fire? she is terrified of heights and has been put on the top floor of the building.
I tried to write to the Community Rehab Team last week but have received no reply so I will write again as Elizabeth has given us all consent.
I would like to know how long the oven has been out of order and when a new one is coming as it is inadequate to have the ovens in someone elses’s bedroom in my opinion.
I can imagine a scheme like this brings huge profits to its owners but I am not convinced that everything was OK in terms of health and safety and I would like to see the Health and Safety and Fire Risk Assessment.
As you can imagine such basic facilities in my opinion should not be used for more than a month and it has now been more than a month and today we saw signs of distress in Elizabeth. Yes I agree she should be living independently and had issues at home/with sharing things in accommodation, but I do hope it will not take months before she is moved.
There was confusion about the pin number last year that had not been given but now Elizabeth has this. Elizabeth can shop, can go on public transport but not too far – but whilst she is independent wishes to be closer to home.
I’ll keep you all informed – I will be pleased when Elizabeth moves from here but she will need support in obtaining permanent accommodation (not of supported housing/living schemes).
Brief Summary of Email sent today 14.01.19
I had already written to Elizabeth’s care coordinator (PM) twice but received no response so I today wrote again. Elizabeth’s sister tried to ring but there was no response also.
Email to the care coordinator PM, JK CEO of mh Trust, all the local councillors applicable, LO of ECRHT. IM Consultant Psych, BN Director of Soc Servs
Heading Accommodation : ………………….
No counselling in place – where is budget being spent?
H&S concerns in event of fire and procedures in place. Elizabeth would not get out. I am most concerned.
No oven/hob working so I brought two rings to cook on. Kitchen in two tiny halves – small tiny area sink and kettle in one half and the rest of appliances in the bedroom of staff member, ie microwave and small electric oven.
How long will it take to move Elizabeth into permanent accommodation as nothing seemed to be happening.
One option that was good was dismissed as this would require a two bed place so that Elizabeth could move in with a retired MH nurse who would like to live in this area but this was not agreed at recent meeting.
A one bed flat has been allocated but there is no communication with the family. Bidding for properties can take time as you are up against hundreds so it would be nice just to get a call to say when this will take place.
Proper assessment. Benign tumour not monitored for years.
Counselling required as Elizabeth is phoning my friends for this and is totally mixed up.
Consent form signed by Elizabeth so team can correspond and we do not hear “we cannot talk to you as L does not give consent” – L has given her consent so that cannot be an excuse of holding things up.
I hope that Elizabeth is not kept at this property for months on end and I am questioning whether fire inspections have taken place. This is a place for vulnerable people but that does not excuse bad standards. I want to know Enfield how my daughter will get out of this accommodation as I can only see the velux windows as she is on the top floor. She is petrified of heights.
I could not see any fire extinguisher or fire blanket in the kitchen. The oven should be replaced and there should be a proper hob but now I have brought along one saucepan and one frying pan together with the two rings that anyone can use.
I have requested sight of health and safety fire risk assessment reports and wonder when the property was last inspected.
I have requested a proper assessment on diagnosis and MRI scan.
I have not had one acknowledgement to my email sent today from anyone so I will keep writing on here my record of the communication by London Borough of Enfield.
This may well be temporary accommodation but still, the kitchen arrangement is surely not in keeping with health and safety standards.
My Email Today:
I wrote to everyone plus Head of Council/Trust, because unless something is being done Elizabeth will go downhill. I’ve had her on the phone this evening saying it is noisy but Elizabeth is hyper sensitive to sound and also scent
I questioned when bidding would commence? as we were advised there was no hope of what we would really like to see, which is Elizabeth move in with a family friend who is a former MH nurse to a two bed flat. According to Elizabeth’s sister tonight, her care coordinator has other ideas but since my two emails had been ignored I had to resort to copying absolutely everyone in as nothing would otherwise move forward so I thought.
I addressed my main concerns which is that Elizabeth had been in this temporary accommodation now for about a month and how much longer would it take to move her as nothing had been done regarding bidding despite the fact a pin number was issued in November last year. If you are having to bid for housing when there is very little housing available this procedure could take some time as you are bidding against 164 applicants for only 150 homes so it says in the letter but already much time has been wasted. Elizabeth would need help to bid for a flat and this help did not appear to be forthcoming.
In addition, Elizabeth has been turning to friends who have acted as counsellors because nothing is being done to help her psychologically or meet her physical needs as she has no GP whilst she is living outside the area so this is very neglectful in terms of duty of care.
The other issue is that Elizabeth needs an assessment for the other diagnoses as well as MRI scan.
I spoke briefly to the scheme manager who was very nice. I told her that my main issue was with the CMHT who appeared to be doing nothing about the situation despite more than one visit by them to the scheme.
I mentioned I was concerned as to how Elizabeth would get out in the event of fire as she was afraid of heights and could only see the Velux windows as a way out onto the roof but how would Elizabeth fit through these? The Manager said they had an up to date Health and Safety Risk assessment but I still had concerns about fire evacuation procedures.
I pointed out the oven and hob were not working but apparently this is turned off as a health and safety precaution because of other residents due to risks so there was a microwave and a small grill oven but not altogether as the rest were in a bedroom which doubled up as an office. Anyway for temporary accommodation it is not that bad – at least there are no bed bugs but Elizabeth has been there a month now and I want something done about it by the ECRT.
Elizabeth had been in a previous scheme for over 1 year, then problems with bed bugs and 5 fumigations persisted. At a recent Manager’s Hearing someone on the panel seemed to accuse Elizabeth of bringing in the bed bugs and I was so proud of her to speak up for herself and say it was another resident who admitted to this fact.
Because Elizabeth is nearly 32 she is in need of a place of her own and her own space and she is not in need of a care home or supported housing as with her condition of autism Elizabeth sees things in a different way and has problems with communicating with others which can lead to clashes. She is under a MH team yet she has been diagnosed more than once by other professionals as having high spectrum Aspergers. Though I believe it is CBI because of the enormous quantities of drugs given in the past and I would now like a high resolution MRI scan to look for signs of inflammation, to check on the cyst that has been ignored for so many years. There is no care package for Elizabeth within this scheme and the pin number for bidding has been a long time forthcoming due to some mix up by Enfield Council who erroneously stated she was not entitled to a pin number despite an assessment that said she was. This has held matters up even further than necessary. We finally received the pin number in November 2018
I also added my concerns to the issue of inaccurate healthcare records that contained defamatory comments written by complete strangers in the care plans which were completely untrue. I have had to go through and re-write these care plans myself to ensure accuracy and take out the lies. I further decided to investigate where these strangers were based and traced two to St Ann’s Hospital. The one who has written the worst comments seems to be invisible and I would like to know exactly where this woman is based. Despite asking for these defamatory comments to be removed they still remain and I am far from happy about this.
My email to everyone was very effective I am pleased to say to the point that the care coordinator is now asking for the pin number but it is not good when you have to fight for things like this and what vulnerable people who are drugged up would have the energy to fight for things like I do. I am more than happy to feature everyone’s account of similar dealings with their local areas as my guest bloggers so lets hear how many other similar cases there are elsewhere and I need to know which area so that this can be clearly recorded and posted to the right people via Twitter.
Before Elizabeth was assessed for the council placement, I was with registering for private accommodation/housing benefit. She was meant to live at this previous accommodation due to terms of her CTO but was faced with eviction because of my justified complaints. Despite 5 fumigations the bed bugs persisted I came round one evening to find there was no bedding or anything comfortable for Elizabeth to sleep on as she quite rightly refused to go back to her bed bug infested mattress. No furniture was allowed on the business premises so we were told. This is in my lounge at the moment and it would be nice if we could have it delivered to Elizabeth’s new scheme. I will never forget the comments by one of the advisers at the housing office “how did you manage that” he said in terms of getting her out of this previous scheme where there was no front door key either. So I told him how I had no choice but to complain but still he looked astonished that I had managed to get her out of a place that was clearly meant to last a lifetime, especially since they had issued a Death Plan questioning Elizabeth at age 31 as to what kind of music would she like at her funeral and how would she like to be buried and would she like to be resuscitated or not. We as a family were excluded so I wonder how many more councils have issued similar death plans for young people – I would like to hear which areas issue death plans and wonder how many areas are doing this kind of thing.
Following my email to everyone including MP Joan Ryan MP I am very happy to tell everyone that bidding will now commence but it means Elizabeth will have to go over to a special centre in order that she can bid and who knows how long this will take but at least something is being done about it.
I will keep you all informed as to progress and I hope this will not take forever as Elizabeth has waited long enough.
I have asked to see my local MP, Joan Ryan not just about this but I have grave concerns about another area where there is serious abuse going on and I want the whole matter raised in Parliament.