Best interest in the eyes of the Professionals and court is a supported living scheme which is a house shared by two others and a support worker who is supposed to be there 24hrs a day. When Elizabeth first moved in there was no running water/toilet facility – things were not ready in time when she was suddenly discharged into the community and she was completely traumatised by her lengthy stay on various acute wards. It took her a while to settle down. This is the longest time Elizabeth has remained out in the community and is currently on a CTO but back on “medication” – an antipsychotic drug called Risperidone. The CTO Report/care plan full of errors and spelling mistakes stipulates she must live at the scheme and none of the family must take her away. The care coordinator was made aware of problems at the scheme of a health and safety nature some time ago but the manager of social services claimed she knew nothing of the fact Elizabeth had slept on the settee downstairs for three nights previously. Twice Elizabeth’s room had been fumigated but no one has removed the bed or mattress that was infested with bed bugs. The room has today been fumigated but still old bed and mattress remained. Elizabeth’s back is still covered in red bite marks which I originally thought to be an allergic reaction to Risperidone as she had to previously be taken off this drug due to allergy according to past files.
At my insistence Elizabeth was moved into the spare room where unlike her original room she at least had somewhere to hang her clothes. Most of her possessions have been placed in bin liners since she moved there going back to last year. She has had nowhere to hang her clothes or put away her possessions tidily, the very basics that you should expect from a scheme which the Local Authority provide which I expect costs a fair bit of money each week. So at Xmas when we saw still nothing had been provided we ordered a nice wardrobe and chest of drawers for Elizabeth. We asked if she could have this along with a small fridge of her own and received no objection. We did not just go out and buy this without asking first. This was discussed with the care coordinator at the time even mentioned about reimbursing the money to Elizabeth’s sister now NR as I have been forced to delegate my role threatened with huge costs by the Council if I dared to continue in court. I found the Court system unfair/biased and in favour of the Professionals based on me being “unreasonable” for disagreeing with doctor’s opinion on diagnosis and treatment. The social worker who took me to court was gloating that Enfield Council were now the NR but they were only appointed as ‘nominal’ NR as I turned up at the wrong court having been given the wrong details. As I did not agree with treatment or diagnosis I could not lie in court as there was such conflict of opinion by various other professionals however I was clearly at a disadvantage without Huntercombe’s Report on diagnosis that they still refuse to release despite the ICO’s involvement. So tonight I was most upset to hear that Elizabeth was back in her previous room and expected to sleep on a mattress with all dead bed bugs (and live ones!) which are clearly visible. She telephoned me as she could not find any bedding – her possessions were all over the place and some were in the bin vault outside. I felt perhaps she should have waited a few days before moving back into that room as it smelt of chemicals and even though the fumigators say it is OK after a few hours to return it is not very healthy to smell these chemicals but when I heard the old bed had not been removed I went round to see Elizabeth taking with me a quilt and pillow. All that remained in the new room was her fridge. The problem has not been solved. I saw a live bed bug crawling on Elizabeth as she had been lying on the old bed. I was very upset that the problem had still not been resolved after so long and that the old bed had not even been removed. This could well the source of the problem. I took a photo of this together with Elizabeth’s back and the state of the bed and mattress. I told Elizabeth to move back into the new room once again as the problem had not been solved.
Elizabeth’s sister phoned an out of hrs number of the Council but could not get through so instead emailed them. I managed to speak to them myself today and they promised I would be called back by someone from social services but I made a point of saying that not one single Professional in the team are speaking to me. It is like I am invisible. They will only communicate with Elizabeth’s sister I delegated my role as NR to.
The other upsetting thing was that Elizabeth told us a form had been given for her to sign and fill out. This form was a Death Plan. It is unbelievable that such a form should be given to someone young like Elizabeth who is only 31. In this form there are questions as to how she wants to be buried or does she want to be cremated and in one section Elizabeth writes that she does not know where she will be as if we move away and the rest of the family have moved away in the future then Elizabeth may well wish to be nearer her family one day. I thought such a form was premature and upsetting to be presented to someone like Elizabeth. I think it is very wrong. We are totally dismissed – the entire family like we do not exist in the presentation of such a form. I have asked others who know people in care or similar schemes and not one has had to sign a form like this.
We have been deluged with literature on forthcoming local elections. I’m looking at the Conservative campaign leaflet right now. There are three points mentioned – to re-invigorate Enfield Town – fill empty shops etc. To keep people safe – reopen Enfield Police Station and double numbers of council funded Police Offices. To keep Enfield tidy threatening prosecution for dropping litter and fly-tipping. Sadly no mention of improving care in the community or anything to do with supported living schemes – not a mention about mental health or anyone suffering from disability. We have a Labour run Local Government as it is and likewise they do not mention MH or seem to care as I had contacted the local MP and not even received an email back even though I went to an event and spoke personally with one of the assistants.
So tomorrow the family will contact Environmental Health although on one occasion I think Elizabeth’s sister said that she was dismissed by them as this not being serious enough for them to get involved and was advised to contact the Council instead. I shall see if I get this response myself tomorrow.
I informed the care support worker that there was still a problem at the scheme. Elizabeth settled down in the spare room and I noticed a light was left on in the old room so I phoned the scheme. Tonight there is a male support worker on duty so I told him about the light and during our conversation he mentioned that they never had a problem like this before and said that Elizabeth must have brought the bed bugs into the property. How would he know they never had a problem as he was not working at this scheme in the first instance. I did not like this one bit – we do not have a problem at our house and neither do the rest of the family so exactly what did he mean. Constantly I feel when things go wrong blame is put on solely family/Elizabeth and the only thing I would add is that no way on earth should that bed or mattress have been just left in the room and Elizabeth expected to go back and sleep on it the same day as the room has been fumigated. A new bed and a new mattress should have been provided well and truly before now as this has been going on for months.
The temperature in the house is very warm and that is why we bought the small fridge as food was going off quickly. I bought in a thermostat regulator for the radiator but this has not been fitted to my knowledge and we have had to put the nice furniture we bought Elizabeth ie wardrobe and chest of drawers in our living room as the owner and manager of the scheme refuse to have this and stated they had ordered furniture themselves but the question is …… where is it?
Anyway I will keep you all informed and as this is an important health and safety matter and all I can hope for is that the old bed is taken away once and for all. Perhaps the room will then have to be further fumigated but all of this could have been done much sooner causing less distress to Elizabeth who cannot find any of her possessions which is distressing to her and I often get calls asking where things are.
Our case is not good but I am in touch with very sad cases right now where total disregard is given to the vulnerable person and their families. I am going to be featuring a real life case of a very serious nature shortly.
The pictures above were taken on 1st May 2018 when Elizabeth texted me to say “I’m back in my old room now but ive lost all my sheets r u coming now” This was at 9.00 pm so I drove over to the scheme to bring her some bedding. When I got there I was appalled. The bed and mattress that was infested with bed bugs remained in her room she was expected to move back into. Nothing had been changed. It seems like profit comes before care in Enfield and they must be paying a lot for this scheme where Elizabeth has had to sleep on the floor and on the settee downstairs (4 times). When I arrived at the scheme just the fridge remained that we bought her temporary room. The old room had been fumigated that same day and I was not happy that Elizabeth was moved straight in there when you could smell the chemicals. Elizabeth has not been happy and distressed at not being able to find her possessions. I often get calls asking where things are and I am not there to help.
Today (2nd June) newly appointed Care Coordinator Paula McKevitt from Enfield Community Rehab (according to Elizabeth) asked her to return to the room that had been fumigated and she has to sleep on the mattress shown above in this appalling condition which I think is disgusting. This care is under ENFIELD COUNCIL and the providers are a supported living scheme run by Simiks Baytree Care – (a private limited company) – a business scheme who do not provide residents with a front door key and this of course restricts them as staff sleep through the night and there have been occasions when staff do not immediately open the front door and is takes time waiting outside to be let in. Elizabeth’s back is full of scars with red bite marks still evident. A live bed bug was on her pyjamas the other day.
I today phoned Environmental Health, Enfield and spoke to a lady called Tracy who said she would pass this on to David Dollemore – who I believe is an Environmental Health Inspector or in charge of the Department because I insisted they come and have a look. Hopefully they will contact Elizabeth directly but I have also contacted all the Councillors as proof of residence was needed in order that she can vote in the local elections. This proof has not been provided by the scheme and she should be entitled to have a copy of their Tenancy Agreement which is necessary for verification. She is now worried she is going to be fined but all of this hassle with her possessions all over the place is bound to have an effect on anyone and not make them feel great.
The manager of the scheme called Buki reassured her that everything was fine with the room and it is safe to return back to it and no one is helping take the possessions out of the bin vault outside in the garden back to her room. I am appalled that anyone should be forced to sleep on a mattress and bed in this condition above. It does not seem that anyone is taking any kind of responsibility. Some of the photos show marks on Elizabeth’s skin where she has been badly bitten and yesterday there was a live bed bug on her pyjamas and I was there to witness this and a care support worker also witnessed a few days prior a live bed bug crawling on the old second hand mattress.
Paula McKevitt works for Enfield Community Rehab Team. They are based at Park Avenue. I have today received the following email from Manager Lucy Omezi who copied in Elizabeth’s sister, Manager of the scheme Lucy Ujamaa, Paula McKevitt and Dr Mirza:
“Dear …… Paula the care coordinator will be going to review the situation this week and will inform you of the update of the state of the flat. I am sorry to hear your daughter is still suffering from the bed bug infestation. This is now a priority and we will be working with the home to address the situation urgently. ”
My email to Ms Omezi stated: “no way should my daughter be sent back in a room that has just been fumigated so soon.” Bed and mattress should have been replaced. Already the wardrobe from the other room has been moved in and she has been told that her possessions need to be moved from downstairs back to her original room. It must be acknowledged that Elizabeth has slept on the settee for three nights and on the floor one night. How can anyone feel well in this situation.
I am glad to hear this is a priority but I do not want things rushed with her immediately going back to her old room if this room has once again been sprayed and that bed and mattress needs to be taken out. This is common sense. (since then it does not seem to be a priority at all as Elizabeth was told by her care coordinator to move back in immediately).
If my daughter does not have the basics such as wardrobe and chest of drawers to keep her possessions in and we spent money on all of this just look at the fuss regarding this – how can she keep possessions tidy and off the floor. She is often phoning me in distress at the fact she cannot find her possessions. This is a health and safety issue which should go to Environmental Health and you should see the state of my daughter’s back as a result of this.” In my email I go on to talk about the CTO papers with wrong NR that I amended correctly and the defamatory comments in the care plan written by a complete stranger yet signed by Dr Ahmed and Dr Mirza. I’ve yet to hear who exactly is Jane Hobden? Everything written in the files is designed to blacken someone’s character and the way this whole matter has been handled is of grave concern as this is being paid for by the Council and there does not seem to be any accountability and it is no wonder why Elizabeth is unhappy living there. To think this is a place stated by professionals and endorsed by court proceedings in displacing me as NR to be of Best Interest.
I think Elizabeth could manage in a place of her own if she had a bit of direct payments but in two years + when I took her away from previous “care” provided in Northampton – a care home where she had no food at the weekend, it would seem there is a bottomless pit of money when it comes to court action against a parent such as myself who has dared to complain about the “treatment” of my daughter. Also Elizabeth has not seen a SOAD (second opinion doctor) and neither to date have Huntercombe provided her with their assessment report which states a form of autism whilst the local team stick with “paranoid schizophrenia” – the whole system is failing to protect people like Elizabeth who are not being treated fairly by professionals.