"Dementia is easy to say and easy to write but not so easy to understand"
How can we get ANY help from Social Services when ALL requests are ignored?
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Has anyone got past the wall of silence that Social Services use when they simply don’t want to address any of the points raised with them about things that they should be helping us with?
My father had an allergic reaction to a change in his anti-psychotics and was admitted to hospital to deal with the results – don’t get me started about the way he was treated once in hospital, another story for another day! – he was later released to a nursing home and was there for several months before we could get him home to live with us again – this is what he begged daily to be allowed to do, and what we wanted (I am his daughter and carer and my Mum helps as best she can but she is 79 and not in the best of health herself so, basically, I am looking after both of them). Whilst in the nursing home, I had seen him getting rid of his anti-psychotics on a couple of occasions and as the result was him being so much brighter, demonstrative, loving and aware, I asked his psychiatrist if he could be weaned off them and he was, very successfully, and has now not had anything for almost a year and is much better for the change, or is just in a more passive stage and that is why he doesn’t need them, but he doesn’t and that is all that matters.
I had certain expectations of the help we would get from Social Services given the fantastic plan laid before us until they mentioned the amount of our contribution which we simply cannot afford so we get nothing from them, no respite, no days at day centres which would be as beneficial for Daddy as the respite from him would be for Mummy and I, we get absolutely nothing.
We sent in a spreadsheet – to the second in charge of our area’s Adult Social Care Team - showing the day-to-day reality of almost a year of our incomings and outgoings to prove we cannot pay for his day centre attendance that we all need, and the basic humanity of Daddy not having to have me wash him day in and day out let alone the extra activities and transportation they promised to pay for which was a boon for me as I don’t drive and getting an unsteady 85 year old, with dementia, in a wheelchair onto and off buses, when they deign to actually stop, is a nightmare. The letter was sent in in mid-September and we have heard nothing since despite follow-up e-mails which have just been ignored.
I have again asked for a referral to the back care specialists – I asked for it initially on my first carer’s assessment in June – the e-mail was acknowledged as is usually the case, but not acted on and a further request has been ignored as has been the case with an urgent request for a pressure sensitive mat so I know when Daddy is out of bed as I do not always hear him and he cannot change his pads and is at risk of falling or getting cold – again, acknowledged and then ignored.
There is no point in discussing anything with his Care Manager; we were resigned to her being totally inept having not even managed to set up my Direct Payments as a carer properly, meaning I wasn’t paid for fourteen weeks and am still trying to get almost £500 in arrears out of her. Again, e-mails requesting the payment have been ignored and now, to add insult to injury, she has contacted the people who help you with the reconciliations and informed them that I need some help with the reconciliations from the period she knows I have not yet received any monies for. She has caused this mess so why she is making the whole issue worse by lying about me, I have no idea, but the stress of dealing with these dreadful people is the worst part of the whole caring experience for me. I can cope with the endless broken nights and sleep deprivation, and the reality of twenty four hour a day care without any time off at all, but having to waste my time dealing with these inadequates is the hardest part of all of it.
So, has anyone managed to work out how to get them to answer your letters and actually do something before you have to go through the formal complaints procedure? And it’s not as though we haven’t gone to the top; letters about all the issues have been sent to the Director of Adult Social Care in our county and nothing from them either, in three weeks; I simply don’t know what to do.
Anything that anyone can suggest would be most appreciated.
My father had an allergic reaction to a change in his anti-psychotics and was admitted to hospital to deal with the results – don’t get me started about the way he was treated once in hospital, another story for another day! – he was later released to a nursing home and was there for several months before we could get him home to live with us again – this is what he begged daily to be allowed to do, and what we wanted (I am his daughter and carer and my Mum helps as best she can but she is 79 and not in the best of health herself so, basically, I am looking after both of them). Whilst in the nursing home, I had seen him getting rid of his anti-psychotics on a couple of occasions and as the result was him being so much brighter, demonstrative, loving and aware, I asked his psychiatrist if he could be weaned off them and he was, very successfully, and has now not had anything for almost a year and is much better for the change, or is just in a more passive stage and that is why he doesn’t need them, but he doesn’t and that is all that matters.
I had certain expectations of the help we would get from Social Services given the fantastic plan laid before us until they mentioned the amount of our contribution which we simply cannot afford so we get nothing from them, no respite, no days at day centres which would be as beneficial for Daddy as the respite from him would be for Mummy and I, we get absolutely nothing.
We sent in a spreadsheet – to the second in charge of our area’s Adult Social Care Team - showing the day-to-day reality of almost a year of our incomings and outgoings to prove we cannot pay for his day centre attendance that we all need, and the basic humanity of Daddy not having to have me wash him day in and day out let alone the extra activities and transportation they promised to pay for which was a boon for me as I don’t drive and getting an unsteady 85 year old, with dementia, in a wheelchair onto and off buses, when they deign to actually stop, is a nightmare. The letter was sent in in mid-September and we have heard nothing since despite follow-up e-mails which have just been ignored.
I have again asked for a referral to the back care specialists – I asked for it initially on my first carer’s assessment in June – the e-mail was acknowledged as is usually the case, but not acted on and a further request has been ignored as has been the case with an urgent request for a pressure sensitive mat so I know when Daddy is out of bed as I do not always hear him and he cannot change his pads and is at risk of falling or getting cold – again, acknowledged and then ignored.
There is no point in discussing anything with his Care Manager; we were resigned to her being totally inept having not even managed to set up my Direct Payments as a carer properly, meaning I wasn’t paid for fourteen weeks and am still trying to get almost £500 in arrears out of her. Again, e-mails requesting the payment have been ignored and now, to add insult to injury, she has contacted the people who help you with the reconciliations and informed them that I need some help with the reconciliations from the period she knows I have not yet received any monies for. She has caused this mess so why she is making the whole issue worse by lying about me, I have no idea, but the stress of dealing with these dreadful people is the worst part of the whole caring experience for me. I can cope with the endless broken nights and sleep deprivation, and the reality of twenty four hour a day care without any time off at all, but having to waste my time dealing with these inadequates is the hardest part of all of it.
So, has anyone managed to work out how to get them to answer your letters and actually do something before you have to go through the formal complaints procedure? And it’s not as though we haven’t gone to the top; letters about all the issues have been sent to the Director of Adult Social Care in our county and nothing from them either, in three weeks; I simply don’t know what to do.
Anything that anyone can suggest would be most appreciated.
Dear 24fan
Firstly let me say how sorry I am for not getting back to you sooner. I returned to Cardiff yesterday via Heathrow from a 2 week visit to one of my sons. This morning after unpacking my case and getting the washing machne going I opened the website and found your email.
Oh my goodness you have got a problem haven't you! This is not something I am qualified to deal with so I have been in touch with a couple of people who can advise you and I will repeat what they told me.
It won't be easy but they are sure you will get things put right. How dare these people behave like this towards you when you have got so much to cope with!
I do hope you come back to this website as here is what I have been advised to tell you:-
* Co-ordinate emails and all reponses in a chronilogical order, photocopy all documents before sending them off to Social Services / NHS / GP. The complaints procedure for Social Services should be available on the internet. (My suggestion - ask Age Concern or CAB or Alzheimer's Society for help in this direction as it would be very good to get them on board.)
* Send a copy to the Community Health Council and ask for acknowledgement for the receipt of your letter or email.
* If the responces are unchanged and the time line for the complaints procedure are not met then visit your MP's surgery in person.
* Again there should be a Carer's Champion in your part of the world. (Ruth marks is the one for Wales). They need to be informed of your difficulties.
* You are still waiting for a carers's assessment. There should be a time line for this to be done. Your GP's surgery should know the details.
* Should you need to attend meetings and it is likely you will have to be sure to get an advocate to attend with you, or if you need a soliciter you should be able to get one through Age Concern.
Well, there you have it! How you will find time to cope with that along with everything else, God alone knows. Maybe youshould go straight to your MP!
Unfotunately I did not get the details from you regarding just how self funding you are. That was my nightmare - if you only partly self-funding you get precious little advice anyway! Luckily for me My husband's social worker was excellent but I can well imagine how it can go horribly wrong.
I can only wish you well, 24fan, and hope something I have sent you will give you a clue as to how to proceed.
My sincere best wishes
Jill
