Elizabeth has been living in a shared house for the past year. The recent bed bug infestation has been the last straw as despite three fumigations there was still a problem. I saw a live bed bug crawling on Elizabeth’s pyjamas and she saw another couple of live bed bugs under her clock/under the “new” single bed that was finally brought into her room. I had a look at this bed tonight. Whilst the mattress seemed to be new the divan/headboard that had a burn mark or hole in it was far from new. The headboard was ripped behind. I had offered to buy her new bed and frame but no one supplied me with details of where the bug infested bed was bought from.
All weekend I’ve had Elizabeth to stay. The cat likes to sleep at the end of her bed. Animals unlike some people and can sense distress and be very comforting. Having a cat is very therapeutic for Elizabeth but she is not allowed any pets where she currently lives and it would be nice if this was the case in future.
It is not the fact that there was a bed bug infestation but the way things have been handled that led to my current complaints. Social services team denied being told of the situation in the first instance and I had originally thought the nasty red marks on Elizabeth’s back to be an allergy caused by medication she previously found to be allergic to. Elizabeth had been sleeping downstairs on a settee more than once which is far from comfortable or satisfactory.
A year has gone by since her moving to this scheme where there is no wardrobe or even chest of drawers and brought round plastic storage units which helped a little. I bought a hat stand then last year due to the clutter all over the floor we asked if we could purchase a wardrobe and chest of drawers which is the very basics that you should expect to be provided by such a scheme. We were under the impression this was OK as Elizabeth’s sister had asked the previous care coordinator so we went ahead and ordered a nice wardrobe and a nice chest of drawers but we were told by the Manager of the scheme whose title is Director of Quality and Systems Registered Manager that:
“I have spoken to Mr M about the furniture due to be delivered and he has said in the strongest terms “no furniture should be delivered to his business premises” A brand new bed is being delivered for Elizabeth to sleep in from tonight and the room she has been allocated has a fitted wardrobe. In addition, our maintenance person will be fitting a wardrobe in Elizabeth’s current room once she vacates it.”
As a consequence we now have that furniture in our living room.
Recently Elizabeth was sleeping in a spare room for a while which had a small wardrobe and a space with a rail where she could hang her clothes but then she was ordered to move all her possessions again down to the bin vault due to the third fumigation and then immediately asked to move back into that room which smelt of chemicals and she could not find any bedding or her possessions so I went round to try to help and I was appalled she was ordered to go back into her original room that same day after fumigation and sleep on the old bug infested double mattress once again. When I arrived I saw and photographed a live bug crawling on her pyjamas and I told Elizabeth to sleep in the other room on the single “new” mattress as she was quite distressed about this. Her possessions were all over the place and mostly downstairs in the bin vault.
On Friday, I had the following news from the Manager of Enfield Community Rehab who had written to the care coordinator as follows:
“Thank you so much for the clarification. I really appreciate the team spirit that we share especially in times like these. Having analysed and reflected on the on-going disputes and accusations that we continue to experience, it is with a heavy heart that we are today issuing ……….. with 28 days notice to vacate Reservoir House. This means that her last day at the project will be the 15th June 2018. Let me know whether you intend to tell her on Monday or you prefer me to tell her. I truly hope you will understand the rational behind our decision.”
Lucy Ujamaa Director of Quality & Systems/Registered Manager
The email advising me of the above was written by the Manager of Enfield Community Rehab Team:
“The Care Coordinator visited this home today (18th May) with regards to the complaint you made concerning your daughter sleeping on the floor. Your daughter was visited today and I also received written feedback from the provider of the home. Your daughter informed staff the decision to sleep on the floor was made by you. She had a perfectly made bed and a clean room which was available to her. Throughout the night she was encouraged to return back to her room but she refused. The staff do not have powers to force her to return to the room especially when she had informed them she did not want to act against your decision” .
The true facts in respect of the above was that I had a call from Elizabeth to say she was spending the night again on the sofa as another live bug had been found on her “new” bed. She said all her things had been washed and she could not find any bedding. What I did was bring a quilt round, a pillow and blanket and when I got there to the scheme Elizabeth was going to sleep on the settee and I offered to make the bed up for her on the new mattress but she did not wish to return to her room because of the live bug she discovered the other day so I made the bed up on the floor with the quilt and pillow because the settee was hardly comfortable to lie on in the circumstances. I also offered to take round to the scheme a brand new bed – a fold up bed that had never been used. I was told that other rooms have been affected and that it was pointless to bring this round as this new furniture could also become infected. When I arrived at the scheme all Elizabeth’s possessions were in bin liners in the lounge and I took photographs of these. The rest of the possessions were most probably in the bin vault again. The sheets and bedding in the bin liners had been washed but were damp and it was a good job that I went round I felt sad as I know Elizabeth can be affected by upheaval and change and felt that things were in chaos and her health could be affected by lack of sleep. She has scars all over her back and was given anti histamine tablets by her GP.
Email from PM – Care Coordinator:
“In response to the question you asked in regards to your daughter’s bed, I have discussed this with the Company Director and have been assured that when your daughter moved into the premises the bed was brand new. As I mentioned in my previous email I checked the bed and do not have any issues in regards to the condition of the bed. As agreed I will monitor the requested work on a weekly basis”
I do not know which bed the care coordinator was talking about as she could well have been shown the single bed but in fact Elizabeth was told to get back in her original room and sleep on the bug infested double bed.
All of this and the fact that “business premises” are mentioned makes you wonder about other health and safety standards as who would ever complain as this is a scheme for very vulnerable people and as is mentioned in the email giving 28 days notice by the manager of the scheme “I really appreciate the team spirit that we share especially in times like these”.
Here are the comments from the care coordinator PM to my younger daughter who is acting Nearest Relative:
“I can quite understand why your mother is no annoyed” So this is a one sided comment but who would dare to show your true feelings in front of those in charge who are Directors or management of the social services Department for instance. Suddenly the tone is defensive towards the “new” bed provided and room being suitable and having no issues and being satisfied but if this was a relative of anyone in the team this would be a very different matter.
Elizabeth is not going to get the fitted furniture. Measurements have taken place but nothing provided. If this had been provided from the start this would have been brilliant but no one cared to provided anything and the room was cluttered with possessions as there was nowhere to put them for a good year and this is very bad.
Thinking of the double bed it did not look brand new at all. I had requested receipt and details of purchase so I could go out and buy a brand new identical bed but this receipt was not forthcoming. Only recently has this bed been thrown out in the garden, after the third fumigation. The fourth fumigation is due on Thursday this week and thank God Elizabeth is going away to stay with other family members who live in a beautiful area. She was out with a friend of mine when ordered to return to the scheme by one of the managers to move all her possessions once again down to the bin vault only last week.
In my email of 10th May to the owner/manager of the scheme and care coordinator/manager of Social Services I stated that it was unacceptable to keep that bug infested bed I photographed, that this would not be allowed in any hotel – just look at the photos I have previously posted. I had also asked to see the Health & Safety Fire Risk Assessments which should be displayed on the noticeboard of the scheme along with insurance cover. This was a brand new supported living scheme when Elizabeth moved in. There is not one fire extinguisher on site or fire blanket in the kitchen. I understand from Elizabeth that electrical appliances have only just been pat tested so maybe my concerns have highlighted all of these H&S issues but a year on from Elizabeth’s arrival at the placement, having not previously complained, it has all of a sudden been concluded that ongoing disputes and accusations to be the rationale behind the giving of 28 days notice and that is because I have highlighted what I see as health and safety issues.
It is wrong to accuse me of putting pressure on the staff in an email by Manager of Enfield Community Rehab. It is not the staff but the management who are having to properly look at health and safety for these vulnerable people. Why is it acceptable for vulnerable people who are not even provided with a front door key to be treated like second class citizens and ignore health and safety standards and if anything, I have quite rightly drawn this to people’s attention so that matters can be effectively improved. “fire extinguishers are not required and could be more of a hazard if provided.” WHY? The Health and Safety Inspector assessed the property on 14 May 2018 that fire extinguishers could be more of a hazard.” why “staff in the home are feeling under tremendous pressure from you? and can no longer manage this? – No that is not true as in fact I barely speak to the staff and have nothing against them whatsoever and in fact have overheard their conversations – “I’ve never worked at a place like this where not even the basics are provided” “I feel like a gipsy moving from place to place” or words to this effect – a brilliant care support worker that worked enormously long hours was sacked on the spot having completed nearly six months of employment. This person was kind and this person I was truly impressed with and was extremely dedicated.
As for Elizabeth being happy – how can anyone be happy living out of bin liners and suitcases for the past year and I have said nothing up until now.
It has got to the point where matters have got even worse and injury caused to my daughter and after a year of living in a place said to be “best interest” I have spoken my mind and I am sure that this scheme with the care provided – a sleep in support worker who stays 24 hrs costs a great deal of money, whereas at home we had nothing in terms of support and all that was needed was a support worker. That would have cost a pittance.
Now my complaint has escalated to the Leader of Enfield Council, the Chief Executive of the Trust – Barnet Enfield & Haringey MH Trust, the Executive Director of Nursing, Quality and Governance, the Trust’s Senior Infection Control Nurse and this has all been advised to me in an email by Tracy Percilis. I will keep you all informed.
This weekend Elizabeth came to stay with us. I washed everything, including shoes and bags and put them on the line.
Today we have had a BBQ and I have come back to the scheme to take away some of Elizabeth’s possessions she is not using.
At home we have her furniture, a book case, a CD rack, brand new wardrobe and chest of drawers, TV. I have discussed with Elizabeth the matter of the 28 days notice and shown her the email from the scheme manager. When I showed her the part about “throughout the night she was encouraged to return back to her room but refused” Elizabeth said this was not true and also the fact that she had been happy because a shared house perhaps is not the right place for Elizabeth – a shared house has at times been quite stressful for Elizabeth and perhaps consideration could be given to a small flat/studio where she at least can have her wardrobe/chest of drawers – her own space might be better than a shared house.
Today we were talking about the CTO iand the whole situation. Apparently Elizabeth was visited by the RC of Suffolk Ward together with someone else she described perfectly and apparently she was threatened that if she did not sign the CTO papers, she would end up back in hospital” There was no Advocate present during this meeting. It is appalling how vulnerable people are bullied by professionals.
I have just received the long awaited report from the Huntercombe Hospital Roehampton but this report does not even have the correct date of birth on it. there are shocking inaccuracies/conflict in opinion as opposed to the emails from the psychiatrists involved in her “care”. I remember taking a call from Elizabeth sounding so happy. “I have just been diagnosed with high spectrum Aspergers” – I even thanked Huntercombe – I will feature more in my next blog.
It is not good that Elizabeth has been denied seeing a second opinion doctor due to dispute in diagnosis and I cannot understand why the legal department of Enfield Council is contacting me now about another consent form. I have been forced to delegate my role as NR and have been threatened with enormous costs. Meanwhile both Elizabeth and her sister were told “your mother is going to lose in court and get enormous costs” . I presented a very good case as to why Enfield would not make a suitable nearest relative but I was happy to delegate the role and crossed out “The Respondent agrees to pay the Applicant’s costs” – why should I be paying the Applicant’s costs when I was dragged to court and labelled “unreasonable” by the AMHP SM for not agreeing to a Section 3 when all the time Elizabeth was going downhill and now look at the current situation.
I am also curious to know why in the care plan it says NO TO SECTION 117 and would also like to know who these names are that are strangers on the care plan writing defamatory comments.
The public have a right to know how much things cost and I have discussed with Elizabeth about what kind of place she would like to move into when I have taken her to meet some of the people I know living in the community who have been given 1 bedroom flats or studio flats and in such a place she could have more space to put her furniture and keep things tidy – better than 1 room in a shared house where no one has even got a front door key which should be provided as it is degrading having to wait on the doorstep like a child waiting for staff to open the door. This is in breach of the Equality Act.
It would be nice if Elizabeth could have the choice as to whom she could have as a support worker as she has started to settle down in the community but would still need some support especially if she was ever to return to work – she could not do much at the moment and has to lie down as she gets very tired because of the drugs she is on and she has also been trying to get herself a therapist – a psychotherapist without anyone prompting her to do so. All she needs is understanding but in a mental health scheme you cannot expect any understanding and the way Elizabeth communicates is different and she can be misinterpreted by the very people who are supposed to be involved in her care.