Wonderful To Be Here!

Discussion in 'ARCHIVE FORUM: Support discussions' started by A1P, Mar 16, 2008.

  1. A1P

    A1P Registered User

    Mar 15, 2008
    5
    Hi everyone. My name is Peter and recently my mother was 'diagnosed' with dimentia. I say diagnosed in inverted commas because as yet this has come more from Social Services than from the medical side (my mother is currently in hospital, however it is for a urinary infection only, but social services have been insisting that she is suffering from dimentia - although I have been told that the treatment for urinary infection can actually make the patient appear to have dimentia-like symptoms? - and are unbelievably insistent upon placing her in a care home despite the fact my mother has vehemently objected to this proposal (to just about anybody who will listen - staff on the ward and even the advocate Social Services appointed had to admit witnessing this), I have ascertained she has a clear understanding of what a care home would be like, and - more importantly than anything - I have insisted repeatedly that I am prepared to move in with her and look after her needs, although admittedly with some care worker assistance (and personally I feel that if she were to be admitted to a care home it would actually curtail her life, not prolong it - she is also extremely visually impaired, is basically blind, and has had arthritis for many years and can't move around on her own so, obviously reliant upon only her hearing and possibly her sense of smell to get any bearings, imagine the kind of horror she would be likely to experience in a home with maybe 60 patients, some with obviously extremely advanced dimentia wandering around, crying out as I've even heard them do in the hospital or in all likelihood trying to touching her without her knowledge or consent?). I also feel that for someone aged almost 80 with these problems that familiarity with her environment is of tremendous importance and the flat I am insistent she returns to is where she has lived for almost 30 years predating the 'dimentia' by 29 years and the blindness by 28.

    I am due to have a meeting with the staff at the hospital to discuss her long-term needs and, having spoken to the Social Services Team Leader (I also found out that not she but the person largely responsible for this insistence of dimentia or actually 'advanced dimentia' as she had put it, and for the insistence 'she can no longer make decisions for herself' and requires 24-hour care is, in fact, not an actual qualified Social Worker as she had told me, and she may even have told me she was senior, but is in reality some kind of assistant - I can't think of the actual term the Team Leader actually used but basically it's a person who becomes involved in social care cases, probably with supervision, but is not actually qualified, and so presumably is not qualified to make any judgements regarding a particular case? Anyway, it's all a huge maelstrom I'm trying to get used to but cutting a long story short I believe Social Services has told me, as the patient's next-of-kin, nothing but a pack of lies, my mother is lying in hospital with no further need to be there the medical staff have informed me other than Social Services insistence that there needs to be further discussion around her circumstances). The 'Social Worker' is also now subject of an official complaint.

    It is great to discover an invaluable resource for advice and information on how to progress with this whole situation which I'm having to deal with on my own and the possibility of my mother facing the possible advancement of dimentia at some stage (I presume she must have been showing *some* signs, although she is as sharp as a pin in any discussion and with any recall and as I say this could have been the result of both old age and the drugs for the urinary infection).

    If I had one question to ask at this stage it would be: in view of my experiences with Social Services so far and my being aware that the only way they could insist upon my mother having to enter a home under the current circumstances would be by having her sectioned under the Mental Health Act (which would be an impossible ruling, in view of her state of mind and the fact she is not a threat to herself, nor anybody coming into contact with her) can they insist upon being present at the upcoming meeting to discuss the plans for her return home (I'm expecting them to object and make it a very difficult and distressing situation) or, in view of the bad feeling at the moment, can it be medical staff only together with myself, and the social care work arrangements could be sorted out once my mother is home and actually in her presence with her able to participate? A complicated situation, I admit, but I would appreciate your thoughts.
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Peter,

    welcome to Talking Point.

    I have moved your thread here into the main Support area where you should receive more replies.

    I hope you will find the forum to be a helpful resource.
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Peter, welcome to TP

    It's a complicated situation, but I'll try to answer your points, bearing in mind that I'm not an expert.

    Firstly, as far as I know, the treatment for UTI does not produce symptoms of dementia, it's the UTI itself that magnifies the symptoms. Sometimes people recover completely from an infection, sometimes (as in the case of my husband), there is permanent neurological damage.

    Secondly, you have a right to be present at any meetings to discuss your mum's future. But you don't have the right to exclude SS. When your mum leaves hospital, her care, whether it be at home or in care, will be the responsibility of SS rather than NHS, and they will have an input into what is decided.

    No, they can't force your mum into care if she refuses, other than by section. In that case, she would be fully funded by NHS, but the section would be short-term, and would be regularly reviewed.

    Have you asked for an appraisal by a psychogeriatrician? (Perhaps under a different title in your hospital, but you know what I mean) Your mum could be properly tested to establish if she has dementia, and at what stage. This would give you a clearer picture of what the future is likely to be.

    And lastly, have you considered the implications of taking care of your mum yourself? It's a hard and lonely job. You would be virtually putting your own life on hold for as long as it takes. And the battles with SS will increase rather than diminish, and if you are on bad terms with them from the outset -- well I wouldn't envy you.

    I hope this helps a little. Bear in mind I'm only speaking from my own experience.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,537
    Kent
    Hello Peter. :)

    I`d be very surprised if SS can force your mother into residential care if you, as her next of kin, are so strongly against it.

    The least they should be prepared to do is allow you to try to care for her yourself, as that is what you so obviously want to do. If it becomes too much for you, then you can refer yourself back to them. As a professional body, the fact you did not take their advice should not be held against you.

    I`m also unsure that SS is able to make a definite diagnosis of dementia, one which would be accepted by the medics without the necessary consultation and tests.

    So I can only suggest you stand up for what you believe in, and wish you good luck.
     
  5. 117katie

    117katie Guest

    Dear Peter

    I have little to add to what Hazel and Sylvia have already said. But I feel fairly sure that a medically qualified Psychogeriatrician or Consultant of some sort are the only people able to give a positive diagnosis of any kind of dementia. Definitely not a social worker, or in your case a non-social worker.

    You know your Mum better than any social worker. I had a slightly similar problem with social services "knowing best" - and even though I begged and begged and begged them to listen to me, they still managed to manoeuvre things via the Mental Capacity Act (different from the Mental Health Act). It resulted in a disastrous outcome for my relative - because the social worker made decisions using and abusing the MCAct. I had warned her 4 months earlier of the probable outcome of her ultimate decision - I was sadly right; she was wrong. And under those circumstances, it is not easy to remain on 'good terms' with social services - in fact it is absolutely impossible to remain friends with them. So I do not envy you.

    My very best wishes,

    Katie
     
  6. A1P

    A1P Registered User

    Mar 15, 2008
    5
    #6 A1P, Mar 16, 2008
    Last edited: Mar 16, 2008
    Hi again everyone. Thanks very much for your replies so far, I really do appreciate all the advice you can offer and I hope no-one has been offended by my view of care homes in general or their patients but we all know this can be the reality and, knowing my mother, I know how she has always insisted upon fighting for her independence, it's of tremendous importance to her, and something I failed to mention is that prior to her admittance to hospital a month ago she was actually living at home, on her own, her initial social worker had even orchestrated for there to be modifications made to her flat to ensure her continued occupancy in comfort and for it to be adequate for any care worker needs, and she was receiving 4 care worker visits per day (involving two care workers each time) seven days per week, every day of the year, visits from a shopper who used to take care of her grocery needs, she would visit each Monday and Wednesday, and two visits per day from a District Nurse to administer drops for her eyes. Also, she received occasional visits from her GP and from her initial appointed social worker who unfortunately left the profession, I think, to return to university. That's quite a number of visits per day for a blind woman to have to deal with (bearing in mind that when they ring her intercom for admittance she cannot visually check who they are, of course, and they were changed quite frequently so she couldn't necessarily go by the sound of their voices which can also be distorted through an intercom, yet SS (I like that at the moment! - lol) are also using in their defence the fact that sometimes my mother would either be angry at the intrusion or would simply not answer the door. I have since explained that without question my mother was insecure about living on her own at home but only at night, as anyone of advanced years is in view of the kind of crimes we hear about today, and so I put to them that it would not be beyond the realms of possibility for her, if she was starting to catch up on some sleep knowing it to finally be daylight outside, to count the importance of that at that moment to be more important than the admittance of a team of care workers who, in my own experience, have done very little sometimes other than to make her a cup of tea, maybe make a sandwich or whack a pie into the microwave, shout instructions at her as if she was deaf as well as blind (!), and then for them to retreat to the kitchen, out of earshot of her, where they would sit down, help themselves to a cup of the tea or coffee that she had paid for together with maybe a biscuit or a bar of chocolate from her fridge, and then proceed to have a chat between themselves to fill up their 20 minute allocation! Also, I believe the cost of all this could also be a motivational factor in the SS's quite recent move towards changing my mother's circumstances.

    Without question they have been found to have gone against the Mental Capacity Act of 2005 by not having consulted with her at every stage of the process, and I believe she is capable of partaking in a discussion on her needs, nor indeed myself (and as far as capacity is concerned one recent example of that is she was able to calculate to the penny the increased cost of a packet of cigarettes when I told her they had gone up in the Budget and asked how much a packet would now cost, also when the nurses have handed her the telephone when I have called and have said "It's Peter on the phone" or "It's your son on the phone" she has known exactly who it is each time without any need for prompting, I also spoke to her on the phone twice the other day, first quite early in the morning and again around 6.30pm and I started the latter conversation asking if she could remember what we had been taking about earlier, needless to say she could, again without any prompting - how many with a relative in perhaps a more advanced stage of dementia, as being suggested by the SS and being used largely for their argument against her being able to live independently, can say that?), and furthermore, despite having told them of my intention to look after her (as she would stand no chance of being sectioned, certainly for the forseeable future), imagine my surprise when I turned up at the hospital earlier this week to find two representatives of a care home over my mother's bed (and she is actually in a cubicle by herself), a male who I have subsequently found out to be the manager of the care home, and a female assistant, manhandling her enough for her to be crying out, with nobody from the hospital present to act as intermediary and to keep an eye on things. This, also, is being looked into (but, considering that care homes receive a sizeable amount per week to look after anyone in their care, you could understand my thinking along the lines that such circumstances could be misconstrued as coercion. Also, I was able to take a look at the inspector's report for the particular home in question and found it to have been lacking in hygeine measures, amongst other things, at the time of the report. The 'social worker's' Team Leader told me that ah, but since then the manager of that particular care home has changed and the situation has improved. Imagine my further surprise when, having telephoned the Deputy Manager of the care home yesterday to verify these facts, he told me that the current manager had been installed for the last 14 months, his position actually preceeding the report by 4 months and so the only conclusion anyone can reach from that is that he was directly responsible for the lack of standards, and so we have another example of SS deception in this particular case.

    Please excuse my rant, and I also hope I don't frighten anyone off from reading this thread any further, as I say I really do value the existence of this site, my discovery of it, and the input of all involved, but I hope you can understand where my hostility towards the social services is coming from and it is only done to give any contributor a clearer picture as to why I feel the way I do. It's not a very comforting feeling to know you have been lied to, that my mother more importantly as the patient has been lied to or perhaps more accurate to say has been completely frozen out of the process, and that my concern at this very moment is to have my mother returned to her home as quickly as possible. I feel that discussion around a care package can actually be done once this has happened and even the hospital has confirmed that there is actually nothing to stop my mother returning home immediately as far as they are concerned, it was a urinary infection for which she went in and that has now been treated.

    I have contacted a removals company today and have been given a quite competitive quote so expect to be contacting the hospital tomorrow to try and finalise a date.

    It may sound like I have it all arranged, and I am largely quite manically driven at the moment to putting this massive injustice, as I see it (and can anybody really see it differently?), to rights, but again let me say that I do value all opinions that I have had, and hopefully may yet receive, here, and look forward to further pointers from members. :)
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Can I ask Peter - is your mother self-funded? Because if not, I very much doubt that the care home option is being pushed as a method of saving money. If she is self-funded I am surprised you've even got social worker input.
     
  8. 117katie

    117katie Guest

    Nope, I don't see it any differently from you!

    My guess is that the Care home staff were there to assess whether your Mum was suitable for their care home, and maybe meaning: ... well, she'll not be demanding; she'll be easy to handle; she'll be easy for us but with money coming in ... (me, cynical??? Nope, just a realist).

    Peter, you confirm my feeling; IF ONLY THEY WOULD LISTEN TO US. Then life may be easier all round.

    Wish I had had the guts to publish the similarity between the SS and "The SS" before!! I had thought about it ....

    Katie
     
  9. 117katie

    117katie Guest

    To comment on Jennifer's last post:

    In the UK, the care home option is not always pushed as a method of saving money, but often as a method of SAVING EFFORT.

    Social Services and Social Workers are frequeantly out of the equation (more or less; not totally but more or less)once a 'Client' or 'Customer' as they are called here, (huh!!) has been moved into a care home.

    It is not always about saving money, but saving them the effort.

    Katie
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I can see it from a different view point , but only because it reads from your post that your mother has had a very good intensive care home packet so she can look after herself at home . she must of been assessed for that , am wondering on what grounds ? . what does your mother doctor say about her menial health or a memory nurse or psychogeriatrician ?


    I can not believe that a social worker can decide what best for your mother with out having some knowledge of her health issue from your mother doctor, or a doctor in the hospital .


    also I am wondering with the SW saying your mother may have a demetica she hinting to you , to appoch your mother to see a psychogeriatrician
     
  11. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I have just a couple of points to add.

    The first one is regarding the Social Worker's qualifications to diagnose. In my area specialist nurses are now, more and more, employed as social workers because they are seen as being able to look at the 'whole person'. This is the theory - whether it is good in actual practice, we will have to see. They have their 'file' or previous history to guide them and no doubt they have spoken to doctors on the ward, and maybe discussed your mum's case with other 'professionals' such as the family doctor. I would imagine that from all of this they have based their judgement that your mum is now in need of care full time in a nursing home. The one thing which is missing in all of this is the very vital input you could have given and which you were not allowed the opportunity to do. This must be addressed by them. You need to ask for a full review of your mum's case to take place as soon as possible, with yourself present at this meeting. Demand this before any final decisions on your mum's future are made as you have never been given the chance to be a part of the decision making process!!

    The second point I suggest is that you tell the social worker that you need the time to be able to visit a few care homes and be able to judge for yourself if your mum's needs can be met. Care Homes vary such a lot and a great deal of care needs to be made into finding the right place where both you and your mum can be as happy as possible. It is never, ever a good place to be - to have to even consider your loved one being placed in a care home. You should not be made to feel that there is only one place where your mother must go. This is not correct or fair. You must be given the opportunity to have a look at what homes are available.

    It is always a shock, especially when mum went into hospital with you expecting it to be temporary, to be faced suddenly with this. You have not been given enough time to consider this properly and need to be able to feel much more in control of what happens to your mum. The first step in regaining some control is to demand a review where you can discuss the matter openly and without fear that things are being done behind your back.

    xxTinaT
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #12 Margarita, Mar 16, 2008
    Last edited: Mar 16, 2008
    Well said Tina in your all you post .

    taking control and taking that power back will make you feel more en - powered . As I know how it can feel like when your rail roadbed into it all without getting all the facts from the medical team .

    yes demand a review a meeting with all the facts from the medical team, then you can make the best decision on where you think your mother should live
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Peter, Tina's right, you must insist on a review. It's vital that you have input into your mum's care package, and it would be very useful if you had visited a few homes beforehand to find out what's available, and the cost.

    The representatives of the care home should certainly not have been allowed to assess your mum without your presence. They should have made an appointment with you.

    Don't do anything in a rush. Take a step back, insist on a review, and try to keep calm. I know you feel you have been unfairly treated, but don't alienate SS completely, you're going to need them!
     
  14. A1P

    A1P Registered User

    Mar 15, 2008
    5
    #14 A1P, Mar 16, 2008
    Last edited: Mar 16, 2008
    Just to repeat because I think the situation is getting a little confused the 'social worker' who has latterly been appointed is not a qualified social worker, nor is she an expert in dementia needs (as I understand some social workers can be, perhaps this is the nurse/social worker concept that has been mentioned). I am not entirely clear of exactly her professional position and I would greatly appreciate anyone with an overview of social services or some kind of internal knowledge if they can shed some light on what type of assistant this person must be? I am almost inclined to believe she is a volunteer! Is this possible within the social services?

    Also, take a look at the examples I gave of my mother's recall and then think of your own relative suffering from dementia, if appropriate. Do these sound to you like someone diagnosed with 'advanced dimentia' which was the term the bogus social worker used. She even stated my mother was on a dimentia ward, again untrue - she is on an Acute Old People's Condition Ward, a marked difference. My opinion is that the 'social worker' was simply trying to add condition onto condition, exaggerating the true and quite simple reason my mother is there, in order to divert my thinking and achieve her own aims. My mother can be very difficult and it could even be possible the 'social worker' had an axe to grind. Whatever, the situation has been reported, is currently part of the official complaints process and I am prepared to take things to the ombudsman, if necessary, and certainly to write to the Director of Social Services (who, incidentally, the bogus social worker also claimed not to exist, that there was no Manager above her Team Leader!! What utter nonsense!).

    The meeting to be held at the hospital is, as you say, to give me a chance to speak to those who have been dealing with my mother during her stay to get a full overview of her health needs (this could merely be to do with the urinary infection, I don't know) and the staff nurse has indicated to me that it is with a view to my mother returning home. I look forward to attending it although even that has been subject to some controversy - I was initially told by the hospital staff that the meeting was to take place tomorrow, this was by two of the ward sisters, the first time I was told was on Thursday and the second on Friday lunchtime, however when I then confronted the 'social worker' about this (as the last time we had spoken, which was on the preceeding Tuesday, she had told me she wanted to arrange a meeting between us both as it was clear we had opposing views on what needed to be done), there was no mention of any pre-planned meeting to take place at the hospital and involving Social Services together with their staff, and that regarding our meeting she would contact me about it - and by the following Friday, she hadn't of course - so I approached the conversation making no reference to what the sisters had informed me, about a meeting taking place, and merely asked about the meeting we had planned and I suggested the possibilty of something towards the end of next week, if she would be available. "Of course," she said - still failing to mention anything else. I then confronted her with what I knew and blatantly asked if she actually knew what it was to tell the truth. I also told her about the care home visitors to my mother, the circumstances in which I had found them, and my findings relating to the particular care home in the CSCI report, which made it quite unsuitable. She was clearly taken aback by all this (I think she had grossly underestimated what I could be like) and told me she was terminating our conversation after I had told her that, due to her stream of deceptions, I was intending to make a complaint and wanted to have the details of her departmental manager. AND we had discussed prospects for me to visit TWO care homes that SHE had in mind based in the area, yet ultimately only one appeared to have been chosen, without any prior visit by myself regardless of the plans supposedly being made as I had earlier made it clear I was interested in visiting both, and that disregard for my proposals made only a few days before had been totally confirmed by the visit on Thursday that I mentioned earlier with the care home manager and assistant which the hospital staff has confirmed to me was their mental assessment of my mother, a definite part of the admissions process to that particular home!!). Why hadn't that been cancelled in view of the changing plans?

    Whilst waiting for her Team Leader to then call me I was called by the staff nurse at the hospital as a result of the call I had made to the their Complaints Department after witnessing my mother being manhandled by the care home manager and his assistant, with no hospital staff present in her cubicle at the time, and she told me when I asked her about the impending meeting I'd heard about that it had been cancelled because they were awaiting 'further information' and that they wanted to get everything together in order I could get a full overview of what was going on (astonishing, considering I had only had confirmation of it that lunchtime). She also confirmed that the 'social worker' (who I then swiftly informed her was not a qualified social worker, I don't know if she knew this or not, she didn't comment) had been in touch with the hospital earlier that morning, curiouser and curiouser as she knew exactly why I had been wanting to contact her, which doesn't come as any surprise as I had made it clear I was wanting to speak to her since 8.30am that morning, I had actually called the previous afternoon, 4.45pm and she wasn't available, and had told the reason for calling to the receptionist (possibly a mistake, forewarned being fore armed) who said she would explain everything to the bogus first thing and, although I don't know what was discussed in the call between her and the hospital, I feel it could well have been in order to ask for the meeting to be rearranged because the rug had been pulled from under her, that she would be unable to explain her actions on her own, and to allow the Team Leader (who just happened to be off work on Monday) to take her place and hopefully be able to provide a more 'qualified' answer to the very pointed questions about conduct that she can expect to be asked. All coincidence? Perhaps.

    Oh, and the other thing is that when speaking to the Team Leader who was taking down my issues for the complaint she tried to blow holes in my arguments, tried to hold influence over what I was saying in order that I might possibly retract something, and - and again I don't have sufficient knowledge of the complaints preceedure - but I have a suspicion that when confronted with a complaints issue she might not have been supposed to do that, but merely to record the issue for the complaint before passing it all onto her manager to respond at Stage 1? I also have misgivings about the meeting if she is to attend, and she seems pretty determined to, because perhaps having met me in person that might also allow her to say something to the manager which would then give her additional knowledge of the complainant? Maybe she will try to deduce if I would be likely to take things further, that sort of thing, and that could influence the response.

    As I say, maybe all crazy notions at this stage, but it certainly appears that not everything is in order and thanks again for all comments. :)
     
  15. 117katie

    117katie Guest

    Dear Peter

    I'm beginning to find it very difficult to work my way through your problem - as I'm sure you are.

    You need to establish first exactly what this 'bogus social worker', as you call her, is. And I doubt whether anyone on TP can help you establish exactly what her "job title" is. So, your first question at any meeting could be: who is X? What is her full job title? Is she a fully qualified social worker? If you are told she is, then you can later check her out on the Register at:
    http://www.gscc.org.uk/The+Social+Care+Register/Check+the+register/

    They're not always easy to track, but if she has an unusual name, it might be possible.

    Ask the 'bogus SW' herself - and write down whatever it is she describes herself as.

    It may turn out that she is fully qualified/approved/entitled to work as a "something else" within the team - but until you know, you will not rest easy.

    Apart from that, nothing else to suggest at the moment. Each of our experiences is completely different - some of us have had similar problems to deal with; others have not. So, trying to unravel the spaghetti-junction is tricky and different for each of us.

    Katie
     
  16. A1P

    A1P Registered User

    Mar 15, 2008
    5
    Thanks Katie. I checked the register (had no idea about it!!) and the 'social worker' (who I think we can now confirm as being an assistant) is not registered, although that may not be entirely surprising as I was told she was not a qualified social worker and I think you need to be qualified to be on there but, interestingly, neither is her Team Leader, so we assume she is only employed in a managerial capacity which begs the question why she wants to attend the upcoming MDT and whether or not she is actually allowed to? Needless to say this gets more and more complex at every turn but it is now being seriously looked into.
     
  17. 117katie

    117katie Guest

    Dear Peter

    Don't jump to conclusions about the social worker - she may well be registered, but a record just not visible for some reason. As it says on the link you went to: "The absence of a record does not necessarily mean that the worker is not registered. Just call us if you do not find the worker you are looking for."

    Likewise for the Team Leader: the nature of teams varies throughout the country, so again, don't jump to the conclusion that the Team Leader is not qualified in her own field, whatever that may be. You need to talk to the Team first, and establish exactly who is what.

    Otherwise you may give yourself a lot of worry about nothing at all!!

    Katie
     
  18. A1P

    A1P Registered User

    Mar 15, 2008
    5
    #18 A1P, Mar 17, 2008
    Last edited: Mar 17, 2008
    Good point, Katie, except I omitted to mention that having tried to search for them myself and being unsuccessful I did actually call the number and, when I eventually got through, the lady there (based in Rugby) searched for the names also, including any spelling variations. No records of either the 'social worker' or of her Team Leader (although, as you've mentioned, it doesn't mean they're not there, but I think it's clear that they're no way in quite the positions they've been saying they are). As I say, things have progressed and it is currently being looked into. (And you'd be surprised who I've been speaking to about it!!;))
     

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