There is such a thing as integrated care in the area where I live and I just do not think this works – the care does not seem to be in the hands of the doctors/nurses any more and this led to deprivation of treatment because an assessment was declined by non-medical personnel in the first instance. I was forced to have to look for private care and then when this failed in order to obtain the drug Clozapine on the fourth day I had to look for solicitors to help in the matter as this could have caused serious injury when no one neither- medical or social care professionals cared.
Recently we have been subject to what I see as bullying/harassment/intimidation which according to the Manager of the Home Treatment had nothing to do with her and orders were being given to her team elsewhere. I have reported this previously on my blog about phone call after phone call and visit after visit but I recently had to report to the CQC about my fears of the difficulty in obtaining the drug/ blood tests now that care had been transferred to another team – community MH team where the “treatment” has to take place in another area miles away. This gives immense difficulty to my carers as Elizabeth is suffering from Agoraphobia and not all of them drive – this has to be dealt with during the week and I work full time – surely a better arrangement could be made but it appeared not when I called at the local MH unit. I was told that I had to go to the neighbouring borough and take Elizabeth there for a blood test – I was then given a supply of packs that enabled the blood test to be undertaken at the local hospital but I had to get in my car and drive to the neighbouring Borough. I now have to arrange for one of my carers to have to go all the way to the local hospital as the Pharmacy is only open Mon to Fri 9.00 am until 5.00 pm and I work in Central London. Before I could go and pick up the drugs from the MH unit on a Saturday. This was a good arrangement.
So my experience of integrated care is terrible. Life threatening to the point that no one will deal with you – uncaring when a former patient’s wishes are not listened to. I hope that the CQC will look into this thoroughly and what has been going on and I have messages etc to prove it all.
This week I received a recorded delivery letter from the community MH team consultant psychiatrist and recently we have been advised of a new social worker – one who has not directly been involved in the initial incidents. So I picked up this letter on my way to work until to read that they were coming round the same day to my house. No notice given so how could I get a day off work without having any notice whatsoever. My carers sometimes take Elizabeth out so on the train on my way to work I had to telephone and make sure they were in as they announced they were arriving at 11.00 am. I then tried to rearrange this appointment but no one bothered to ring me back. So despite my attempts to cancel the meeting went ahead without me being there and the letter said “how best they could help” – after five months not one ounce of help has been given to the family or to Elizabeth and it is cheaper for her to be at home than in an institution and would not cost a lot to provide just a little as what is needed most of all is someone – just a young person to come and take her out somewhere and encourage this. I am disappointed as there is no help through the local carers centre either whatsoever. The first thing I asked about was their scheme where they appoint someone to call and take the person cared for out for an evening or activity of their choice. When Elizabeth came home and did not want to return to the care home this was one of my first places I visited as I remembered this worked well before previously but now the previous provider has been taken over by the Carers Centre and most of their activities are during the day and I benefit from nothing. Recently we visited on a Saturday and I had to bring Elizabeth along to this. They had like a drop in centre and buffet lunch and I wished to question about how things were progressing for this scheme and they could not answer my question as the person concerned was not there. When I contacted them during the week I found that they claimed never to have received my form. I was told they would check their records to see if I sent it in or not. I responded that I keep excellent records myself and that I would do likewise. They then said that they had not received my form at all that they had no record of my request whatsoever. Previously I spoke to someone else there who I wanted to act as a mediator for me as I could not bring myself to speak to people who had put my daughter’s life at risk the first instance. We discussed this scheme they had to provide like a “buddy”. So I checked my records having been told there was a six month waiting list for this scheme and when I checked my records I had sent the form in on the 29th of July. When something is funded through councils I suppose I can see why there is no help – in fact there may be help for others but not in my case at all – no help whatsoever from anyone in this Borough. I hope the team are reading this as they know all about my blog. I do not trust sending in the new form by post and so will have to get someone to hand deliver it to the Carers Centre and that way I will have a witness that it has been delivered and on what date and of course there will be a six month waiting list and Elizabeth will be at the very bottom.
The meeting went on in my home without me being present like I was saying with a carer present who reported back to me everything just like the home treatment team were reporting everything back. So the consultant psychiatrist and new social worker turned up like they said in their letter and talked about a reduction in the chemicals. I have pointed out but to no avail to the three consulting psychiatrists from the Home Treatment Team that Elizabeth was experiencing dizziness on these drugs and the advice of a leading expert who claimed it could be because the level of the drug was too high. Now it has come to their attention Elizabeth has stopped smoking since coming home from the care home where everyone smoked. This apparently affects the level of the chemicals and therefore this means there could be the possibility of a reduction which I am delighted about. I am hoping that Elizabeth can manage on less chemicals after all she managed without any at all thanks to the team in the first place when no one wanted to give them despite my efforts. So I am happy about this and the consultant psychiatrist said that the reason the visit was arranged so hastily without any notice was due to the fact she was about to retire. The new social worker questioned Elizabeth on what she enjoyed doing. The fact is she is not going to hear everything that is needed and it is not much. What is needed is someone to come round and take her out a couple of times a week places and accompany her for a few hours. Surely this would be cheaper than what the private hospital and care home would cost? I do my best at the weekend and it is not easy sometimes to persuade Elizabeth to come out. Today she flatly refused to go to the gym for the early morning class. I have given her two options – either you come to the gym with me or you walk halfway up the road on your own. Yesterday I had to do the same two options – either you go for the gym induction or you come out with me to meet the survivors group I go to. In the end she chose the latter. Now I have said that I need to order a trainer to come to the house as I am paying £30 a month for Elizabeth’s membership at the gym and it is a waste of money if she refuses to go just once a week and so I would rather pay for someone to come to the house – a personal trainer who would take no nonsense. This has to be a young person of course and I am going to look for this next and organise this so that Elizabeth does some exercise during the week whilst I am at work. Today she wants to go to an event nearby that has lots of things going on and I would have to drive there and I have agreed to do this. A friend and one of my carers who is not a young person has just telephoned me to say she has three times offered to take Elizabeth out during the week and each time she has refused. There is no way on earth as a mother I want to see her refusing to go out altogether and I am determined that this will not happen.
So getting back to the new social worker – this professional apologised for the short notice in an email to me. I had written and requested that in order that she gets to hear what is needed most of all she needs to speak to everyone in the family not just me and I have given her some dates when I can possibly get yet another day off from work. It is one thing asking Elizabeth what she enjoys doing however there is a problem at the moment as not only myself but my carers are having trouble in getting her to go out anywhere and I am not the kind of person to take no for an answer but I do give choice. I cannot drag her out of bed to go to the gym so I have given her choice and that is fair in my opinion. The choice I am not allowing is to lie around doing nothing at home. When I am at home I have things to do and there is no time for myself any more but I am not complaining as I think this is not a huge problem at the moment but could be if I was to say OK then you stay in if you want to . I would like Elizabeth to have a normal life – as near normal as possible so how is she going to regain her confidence if I just take no for an answer. Every time I take her out it is painful for me to watch – someone with such fear of going out for no reason other than lack of confidence, feeling dizzy on the drugs – getting herself in such a state she is ill yet once out with me she has a great time and gets to meet wonderful people like my friends and going out for nice meals, seeing interesting places and going on fantastic courses such as INTAR and ISPS – I expect at the care home and hospital in order to get her out this is where the Lorazepam came in “as and when required”. I refuse to give this highly addictive chemical on top of the chemical she is already on. Elizabeth soon forgets her anxiety and even amongst huge crowds and it was busy last night where we went and we had to go on escalators and Elizabeth is afraid of heights. I believe in perseverance in order to overcome fear.
Now I am going to turn my attention to the system of benefits. I as a mother would love to see Elizabeth in a job earning money and she did once have a job and worked – I know it is not possible right now. If I was not here to help nothing would be done as only now have I had this letter after five months of being home that certain professionals wish to know what help is needed. So ATOS is the organisation used for dealing with PIP claims and there is a six month waiting list due to backlog so I was told. In order to get this you have to justify whether someone is disabled or fit to work and this should be interesting. As no one was helping I telephoned. I have dealt with the application and I have been told that an assessment will be required. Like I have documented there are good days and bad – times when I can get Elizabeth out and other times when it is very difficult and all the time Elizabeth clings to my arm as she thinks she is about to fall and claims the drugs are affecting her sight and she has a fear of falling to the ground. I hope that they will send their assessors to the house to see her and I have no idea if they will announce that she is “fit for work” – I intend to inform everyone of their decision. I would be overjoyed if my daughter was fit for work as I would love to see her move away from the mental health care system. If I did not work myself I could not do anything with Elizabeth right now but it is so hard and it is made hard by a system of care that does not care at all and does not appreciate the impact when the family and person cared for are getting on OK and that all is needed is a fraction of what could be spent elsewhere. In other words a saving to the taxpayer and I myself am a taxpayer and am interested in seeing where money is wasted and where it could be better spent. Without Elizabeth venturing out on her own anywhere – a prisoner of her own mind – how can she work – in order to work you need to be able to concentrate to a degree on what you are doing – how can Elizabeth concentrate when she is on a last resort chemical that makes her so tired and dizzy she has to lie down after taking it. I would like to see her do some voluntary work either with animals or in a charity shop such as Mind. I tried to get jobs for her even whilst she was in hospital but now she is home – there is more hope however Elizabeth is more disabled now and that is what hospitalisation has done for her.
Anyway I am now going to look for this personal trainer for Elizabeth to come to the house during the week.