Bit of a ragbag ramble this evening. Including some tips for social care bods. I had a bit of a sort out today and a few choice docs from Oxfordshire County Council (OCC) popped up. Now OCC are doing a seriously cracking job at keeping their heads down so far, despite clearly being concerned that their involvement in what happened might come under the spotlight at some point. A lot of their exchanges are fuelled by this blog (or “the BLOG” as they call it).
The Director for Social and Community Services didn’t write to us after LB died. Or after the CQC found appalling failings at STATT in a report published in November 2013. Or after the Verita report found LB’s death preventable in February 2014. Nope. He wrote on April 2nd (saying sorry ‘about the death of’ LB) in response to comments I’d written about OCC. [Tip 1. Write to families straight away if someone dies an unexpected death in provision you commission. Not just when you feel publicly threatened]. OCC also declined to attend the pre-inquest review meeting recently (‘nothing to do with us guv’) even though the coroner’s court is in their building [Tip 2. Send someone to inquest meetings when the person’s death was preventable].
There’s a long list of things we think OCC did wrong. Not least giving STATT a green light in their quality review at the end of 2012. A month or so before a Winterbourne View JIP team of three (including an Oxon commissioner) visited and thought the place was a shithole. The commissioner put in a decorating chit (and now says no crap other than shabby detected) while the other two assumed the commissioner would do something about the place. Other than a lick of paint.
OCC self preservation workings are very apparent in docs disclosed to us. For example, in response to a request from the Clinical Commissioning Group (CCG) to offer us a meeting (as I seemed to be softening on my blog. Yes, really), a senior OCC official’s response was What if she brings her solicitor along with her? I think we need to do a bit more thinking before offering a meeting out of the blue. S/he then decides if the meeting goes ahead an OCC person should attend too in order to know what the CCG geezer is saying. Wow. [Tip 4. Second guessing responses and back watching suggests a right old toxic culture which needs urgent attention/disinfectant].
This blog seems to have evened out (only slightly mind) the power differential between families and health/social care organisations. It features in so many exchanges in disclosed documents often with links to posts. Slovens solicitors wrote a pretty steaming letter to us a couple of weeks ago (copying the coroner in) because I’d made an error on a recent post (now corrected).
I was a bit mortified at the time as I’ve tried to be accurate throughout. But given the amount of ‘errors’
cough cough the Sloves have made throughout this foul process (and the slimy, smearing Briefing document they circulated to fuck knows who else in addition to NHS England, Monitor), one error is pretty remarkable really. In the circumstances.
What a murky, murky little biz.
Stay classy, y’all.
‘Confidentiality’, will not permit me to say more, but I do intend writing a post on the law of confidentiality, as applicable to the court of protection.
The real reason for the secrecy of the care courts, and courts of protections, courts, which have more draconian powers than any other, as they alone, can remove your children for life, and all your decisions, is illustrated by the use of a blog.
Worse still the judgements of these courts, are not even published, so the reason for the decision and its legality, cannot be scrutinised, and, effectively they never are, as few can risk the payment of the other sides legal costs, if they lose on appeal, where nonsensically, they are published.
All judgments for my son’s case in the Court of Protection (running from 2006 to present day) have been published. They are self condemning. I can do nothing at all about this. I ad waiting for permission to appeal a decision and the Court of Appeal has so far ignored all the judgments.
How did you manage to get them published publically?, or is it just you got copies to appeal the judgement, which of course you can? .
But the press cannot report what is going on, and the judgements are not accessible by the public for scrutiny, and therefore, no one can check that the whole thing is not a stitch up, as it appears it is for profit.
As the House of Lords Select committee enquiry recently found the Act and Codes of Conduct are not being used as intended.
The CP is deliberately understaffed ie 30% reduction in staff, to cope with nearly double the cases, they are just rubber stamping the LA’s decisions to create their own large captive product- encagement of our children for huge profit. Instead of living them with loving families who care and have fought to look after them, they are not allowed the money to do this , support or community facilities
In 2007 and 2011 and last July Mr Justice Charles actually made written judgments which were passed to me. However I did not get permission to put them in the public domain until last July. Since then only Sara’s blog and Mark Neary’s have been interested. The Court of Protection is so inefficient that it is laughable if it weren’t our sons and daughters. Of course it is a stitch up, a scam of the very worst. The Judge actually wrote that the Official Solicitor’s case was a shambles, and everything just went on as normal. But since last year the press can report on most cases. As for appealing the judgment I was refused permission, and I am now fighting to get permission. Incidentally I have been a litigant in person, done all the work myself, and not paid lawyers to appear in court for me.
Thanks for all this useful information.
Is it always the Official Solicitor, or could I apply to act as Next friend. I have bought a LAG book just arrived.
Its the vested interest of the money, they can make out of our children, that is to blame.
Those in the know, or rich will not be taken
Know how you feel I was a litigant in person to CA,, and looks like I ‘ll be in the CP representing poor, poor Issy.
So many lives destroyed… such injustice, such evil.. such horror… such suffering…
have you tried Chris Booker in Telegraph ??
Forgot to say. That’s why you have got so far, if you can call it that, because you have no lawyer.
You must be very able and brave and strong to cope with all the stress per se but when its your own child its a billion times more difficult…. I know
Not sure really about all this Sarah. All your propoganda has done has hurt the services locally. I am only one of a group of several carers whose children were being cared for well but have suffered as a result of closures and actions based on your negative and unjustified propaganda and political connections. We find it unhelpful and disheartening that your actions can damage so many others. Not sure you care – as this mainly seems to be all about you, not really about your son. This will probably upset you; but I say it on behalf of many who are affected and continue to suffer. A few of us would be happy to meet with you but most say they are scared of vile propaganda.
Sorry if you view it like this Vince. Part of the problem is that parents whose adult children have a good or even alright services/support are scared of losing it and those people with crap are stuck with it. Your comments remind me of some of parents we’ve encountered now and again in (mainstream) education. Parents who will do all they can to keep things just right for their children but couldn’t give a toss once their children have gone through each school year. A complete focus on their child’s future, and by default, the future of their children’s classmates. Keeping a minority happy.
This stops change really, though I understand, given how awful a lot of provision is, why this would be.
I’m not sure you can describe what I write as ‘propaganda’ (though I encourage you to point out any inaccuracies or mistruths on the blog). Or did you mean the campaign more generally? Any propaganda is wrong, negative, unjustified and vile. An independent report found that LB’s death was preventable and the provision was shite. This was reinforced by the findings of the CQC inspection a couple of months later. Sloven hadn’t even tried to improve the provision in the unit in those weeks, despite two people dying.
I’m not sure we have political connections. If we do these have emerged from the campaign action and activity – a (rare) collective effort – and something that really should be celebrated, not tainted.
I have to say we would love nothing more than to walk away from this. We stand to gain nothing other than, I hope, some sort of accountability for LB’s death and some indication that the way in which learning disabled people are treated is actually changing. After todays discussion in parliament, I’m not optimistic that there will be the latter. The former? Well we’ll keep fighting. As I’m sure you would.
Very happy to meet with you and other families to talk about this.
What an honest and thoughtful response. I agree wholeheartedly with your comments and the thought of individuals being denied access to great care as a result of any campaign that aims to highlight inequalities and educate the general public is abhorent to me.
I think you’ll find, that the cuts are deliberate, to force the disabled into independent living.
The funds used for the community and respite centres etc, can then be ploughed into the corporate profits of independent living providers.
This is a deliberate LA policy.
Think how difficult it is for a parent to then prove, to a court, that it is in the best interests of a disabled adult to stay at home with his family that know and love him, if he has no community facilities.
And think how much tougher it is for parent carers without them. .
If you have really been told, it is blogs like this etc, then you are being mislead by propaganda.
The LA and this government survive, and achieve, by such smoke and mirrors.
You have the right to become the relevant persons representative legally, although the Court has refused me. If you go to Court always use the Personal Support Unit, they really do support one. I’m not particularly brave etc. I just have lots of common sense and a healthy disrespect for authority. Dont let the buggers get you down! Sara is it OK to use your blog for this or is a bit irrelevant to the main issue that LB died.
Thanks for this. As you say I won’t get my hopes up, as it is likely they will refuse, as they want a stitch up with the OS , AND I don’t dare to blog about matters in the actual proceeding.
A penal clause as you had will also be standard, I guess for stitch up and again no blog.
How do we stop everyone acting illegally its now like living in the wild west/
Neither is the MCA capacity applicable to autistic, but the NAS etc, have made millions from them and stitched them up on legislation.
Best wishes, Thanks for this back to LAG and Issy juice, poor love…. thanks for thinking of her poor cashcow…….
Vince, it’s kind of hard to see how a person could be positive about their child dying a preventable death. What on earth do you expect Connor’s family to say – “Well, yes, STATT could have prevented Connor’s death, and yes, it failed on all ten heads of inspection a full two months after he died, but hey, let’s not make a big deal of it, you lot just carry on”?
If provision for your child has been altered, it may well be because Dr. Ryan drew attention to the Trust’s inadequacy – but that provision wouldn’t have needed altered if it hadn’t been inadequate in the first place.
I’m glad your child (and others) escaped without harm in those inadequate and/or unsafe environments. But still, you never know when their number might have come up. Sara’s agenda is neither political nor propagandistic – she just wants the people responsible for Connor’s death to come clean, instead of spinning, ducking, dodging and outright lying, so that specific lessons can be learned, such needless deaths can’t happen again and therefore people like your relative will be safer.
I for one am grateful to her.
Vince, to say Sara is doing this all for her is an outrage…. I don’t know anyone who would put as much effort in as she does for something as bad as this is. It would be easy to throw in the towel and give up… especially after all the things her and her family have been through since but she keeps going, because she cares so much.The work she is doing now will benefit all of the parents you speak of, when they no longer have to worry about their child being mistreated.
Also, to use the word ‘propaganda’ is ridiculous, the definition of propaganda is ‘information, especially of a biased or misleading nature, used to promote a political cause or point of view’ Since when was Sara being misleading. Everything she has written is the truth. To then say ‘vile propaganda’ and that you are ‘scared to meet her’ makes no sense, when has Sara ever came across as someone who would create ‘propaganda’ towards parents with children in care.
If this was your child, would you just leave it? Think, ‘well they’ve completely let down my son, destroyed my family and caused so much pain. But, there is a few dudes out there who didn’t get mistreated so I will just let them off’ One person being mistreated is too many and as we have learnt throughout the course of this blog there has been many more. Something needs to change.
And if you are wondering why I have insight into what Sara is like, I’m her son and Lb’s brother. I’ve had to deal with the pain of this and to see someone claim my mum is doing ‘wrong’ and ‘doesn’t care’ about Lb is unbelievable because I see her working for the campaign all the time.
Feel free to point out anywhere I have used ‘vile propaganda’ Vince, sometimes it just slips into my writing.
Vince you are intitled to your point of view, but I CAN INSURE YOU THIS LADY AND HER FAMILY AND FRIENDS HAVE THOUGHT FOR EVERY ONE RIGHT FOR GOOD CARE FOR A LONG TIME. She nor I WANT PEOPLE TO LOSE SERVICES OR HELP BECAUSE THEIR IS LITTLE OUT THERE. BUT WE ARE FIGHTING FOR MORE THAN ADEQUATE CARE OR PATHECTIC CARE, IN THE HOPE A PARENT MIGHT GET A NIGHT OFF AND THEIR CHILD SURVIVE THE SYSTEM PUT IN PLACE.
To the people who have said their is no disabled persons represented at certain meetings up and down the country, if you can provide the train tickets I CAN PROVIDE FREE ASSISTANCE AND CARE FOR SOMEONE WHO WANTS TO ATTEND BUT NEEDS HELP TO DO SO! You have to remember the people who have helped so far have done everything as volunteers.
You crack on Shirley, your experience is invaluable to parents 🙂
Vince you must not discourage anyone from seeking the truth and hopefully making life better for people who have no champions. People who are forgotten by society. If this had happened to your child would you stop asking for justice? Would you? Not many loving parents would.
Many a time in the past my husband and I have sat through meetings with our LA’s social service officers along with other parents. Before the meetings begin we had half an hour on our own to discuss what we wanted to ask. Many complained bitterly about the lack of decent services and the closures of good ones. However when the meeting started no one had the courage to complain, except for a few, my husband being one of them. We ended up being the ‘troublemakers’ and they meekly made sure their sons/daughters were not involved. Maybe they were scared that they would lose the little they had. I do not know. The officers were delighted no one sang from the same hymn sheet and they continued to make sure they ‘divided and ruled’ as always.
I have never met Sara but watched her on her blog, seen her on telly and to me she and her family must be really brave to put themselves through such trauma. No one does this lightly. She deserves much respect because her bravery is ultimately going to help many people with LD and autism to have better lives.
We as parents of an autistic, have had similar experiences in all our meetings, throughout the years.
All meetings are carefully orchestrated, informationally, and psychologically.
Parents are to be conned, patronised, and bamboozled by lies, misinformation, and no information, until they march their children into inadequate education, and services, and eventually provide the evidence needed in the court of protection to kiss goodbye to them for ever, into the hugely profit making secret, abusive independent living at 18.
Parents have no rights over their children, or choice, and its much less when they are 18.
Parents need to know what is happening, and open their eyes, before it is too late, so they can avoid as much as possible, blindly being taken for a mug by the state.
That is why I wrote my blog posts, to warn parents, so they can learn from what has happened to us, and set out the law behind it.
Parents must avoid traps all the time, so please read my blog posts particularly about Education and the Mental Capacity Act and carers, and how evidence is gained to cut parents out of their childrens lives for ever, to make huge profits. Google finolamoss.
It is no good thinking that if you cooperate you will be alright. Cooperation is what they rely on.
That and fear.
The only way to get anywhere is to get information, question everything, take notes, record conversation and take videos etc.
Vince why would you say this? especially to a grieving parent? Why? You must be trolling or you are very very selfish? This is about justice. Anyone can see that. Why would you question that? Why?
LBs death was tragic. Full stop. But many had very positive experiences of care locally and some in the same unit for ours, but hey – lets shut it down because someone who is so well connected politically and with the cqc is making so much noise. and silence any opinion that doesnt match theirs. Despondence doesnt begin to describe it. Troll? No. Just one of a few able to speak and challenge, when services for their own have been cut abruptly, carers being changed. Goodbye – I for one will no longer read this blog.
Chances are you won’t see this – as you’ve said you’ll no longer read this blog. But I felt an urge to reply here – actually I felt an urge to shake some sense into you – but that’s whole other story. Why my outrage? “LB’s death was tragic. Full stop.” [sorry for the swearing here – feel free to delete this Sara] – but fuck you man. Seriously FUCK YOU. My son is almost 11 and I am terrified that he’ll end up dead in a bath like Connor or dead from a heart attack like Stephanie Bincliffe or Andrew Rawnsley. Their stories need to be told, if they were puppies people might give a shit, but they are not – so the public at large don’t give a toss what happens to our kids. Out of sight. out of mind. Just because your provision has been fine it doesn’t mean people shouldn’t highlight crap provision. We should be championing this blog, the LBBill and all of this issues until we a. have no breath left or b. our kids are treated like human beings, with decency, care, their rights and their needs front and centre. As a guarantee. So you know what Vince – go away and shake your head. Hang it in shame you are failing all of our children and by extension your own.
We should also be asking why MHA NHS and LA provision, is allowed to claim up to £4,500 per week for shocking care that kills.
DLA now PIPs are 105 per week and carers allowance 77 per week.
The only support is at home, and this must be provided and vetted by LA, and under Carers Act 2014, there are no direct payments for the incapable, so you will always have a spy in your home, they call it assessment, and safeguarding .
iN NHS units or independent living provision, this care consists of care workers/ etc on just above minimum wage, often agency zero hours itinerant, drugs and encagement.
This the nub.
It has been made easy money for NHS private provision, and under the MCA LA, independent living provision to make huge profits from social care..
Now systems are such the LA has no support to allow the autistic to stay at home, where they are safe, and to allow family regular respite away from the home. This is the only way they will remain safe and receive the continuity of care they need. And Human Rights respected.
Now all are removed at 18 +, on the backs of them lacking capacity, and the state becomes their family, family is deliberately cut out, on made up neglect/abuse and/or contact upsets, and the children become fodder for the secret , hidden, ad hoc industry of independent living under the MCA, completely unaccountable and unregulated ,with merely a yearly on message, kickbacks GP review, no whistle blowers, and no family, this is the future life for all autistics, and their fami;lies.
Abuse and even death covered up , as all is whitewashed, and no one sees.
But providers get all the incapable autistics state benefits, and over 3,ooo per week for their life.
And lawyers, experts GPs nurses etc all feed into this new lucrative industry created by MCA, furthered by Carers Act , and applies to all those who need social care ie old, behavioural problems, learning disabled. .
Vince, to call Connor’s death ‘tragic full stop’ is a fallacy. There’s no ‘full stop’ about it. The loss of a child is a wound that never heals, especially when the people who inflicted it keep in effect insisting that it’s just a scratch. When Southern Health called Connor’s death ‘tragic’, it was a crassly unacceptable evasion of responsibility on their part. ‘Tragic’ doesn’t just mean ‘very saddening’.
The essence of tragedy is that the tragic event is fated. Inevitable, written in the stars, unavoidable. An unbreakable thread of destiny created by Clotho, allotted by Lachesis, enforced by Atropos, beyond mortal control, no matter how much people of good will struggle to change things. Absolutely not the case here.
Connor’s death was preventable and was due to human malignity and carelessness, not to divine intervention. Connor’s death wasn’t a tragedy, but something far worse. It was a disaster; a PREVENTABLE disaster. That’s not a tragedy, that’s an outrage.
As I say, I’m glad your relative dodged the bullet while they were in STATT, if I’m right in supposing that that you are implying that he or she spent time in there. That doesn’t mean that the services were appropriate or safe. In summer 2013 they patently were not, since Connor died and the CQC (whose inspection in 2013 was not, let’s be clear, requested by Sara; the Commission made its own decision to do that inspection unprompted by anything except its own understanding of its remit and duties) found them to be so grievously lacking.
Why would you want services to continue – why would you be prepared to put someone whom you presumably care about and love – back into facilities that were so unsafe that someone else’s child *died* in there because they weren’t properly cared for; and that hadn’t been properly checked or had vital, basic necessities installed, a full TWO MONTHS later??
As a parent, I wouldn’t have touched it with a bargepole until it was certified safe.
Southern Health knew that following the revelations about the appalling standards in STATT, nobody would trust the place as it was then set up. Rather than doing the difficult work needed to sort the place out & rebuild trust, they chose instead to wash their hands of it. Don’t blame Sara. Blame Southern Health for being willing to take the money for running a dangerously, appallingly poor service behind locked doors, but not to do the work and make the investment needed to fix it once the dangers were exposed to the public gaze.
Stopping reading the blog doesn;t seem like a very useful way of arguing your point. If you are able to speak and challenge, present a different view, then why not do that in a constructive way?
One of the things that is being argued for here is that people with LD should be seen as individuals. If you have a family member that is receiving good care in a facility that the CQC, or someone else regards as unsafe, then what? Do you really think Sara is responsible for any other decision to close down services? Change/cut staff?
What is being argued for here is that people get to CHOOSE how they live. That what works for one should not be forced on others. We are ALL arguing for what works for us – attacking each other is not too helpful.
This is ridiculous. Do you not care what CQC said about services? As far as I know Sara knows no-one from CQC. Are you saying she influenced the outcome of the CQC inspection? That is a serious allegation and one which CQC’s new leaders might be interested to hear. In any case, hearing the opinions of relatives is part of the inspection process.
If Southern Health choose to withdraw services rather than improve them that is their decision. They seem to be withdrawing from learning disability care – maybe not profitable enough for them.
I would not wish my child to be cared for by an organisation with such a poor safety culture. I am sorry if your child has lost good carers but this is nothing to do with Sara and everything to do with Southern Health.
Vince how would you feel if it was your own child that died? Just tragic? That’s it? Now shut up? ? Where is your compassion ? Where is your sense of what is right and what is wrong? ? Where is it?? Very very lucky you with your positive experiences. If your services have now been cut that is nothing at all to do with Sara but because they are inadequate. Everyone knows that.
I suspect it is only you( and not one of a few) that has taken a dislike to this because you are Jealous of Sara and LB getting attention, especially from a higher level ! I suspect no one listens to anything you have to say. Jog on you bitter little person.
Strongly suspect that anything that it written here now will not be read by Vince. He clearly has a very different viewpoint, however for what it’s worth here I am wading in with my say too. As ANOTHER mother who has lost her beloved son to POOR commissioning in Oxfordshire, followed up by unsympathetic and disinterested Social Services and shocking poor management of care staff and dangerously low staffing levels – I think I have a right to my say! Every opinion that is held is based on the person’s own experiences and there was a time when I would NOT have understood Sara and her family’s point of view – partly because until you have experienced both the loss and the service providers closing ranks, you really can’t fully understand. Looking back now I realise that I had an increasing fear of what was happening at my son’s supported living house and my determination to try to stop it and prevent a dreadful outcome was bordering on the obsessive. But not obsessive enough, sadly. If your child or young person is cared for by Southern Health I would strongly urge you to be very aware indeed of everything they say and do. Question everything, make sure that you know absolutely everything that goes on – those “great carers” may be struggling with an unmanageable workload which could result in something awful happening to your child. I’m not trying to scaremonger anyone. I just don’t want there to be another me in the world and for the world to lose another Nico. I am not a political person and fighting for justice for your child has really got nothing to do with politics directly, though I feel bound to say that IF Sara was so well connected I am quite certain she would not have had to go through and still be going through, the hell she is in. If you are reading this Vince, I’m not attacking you but I AM begging you to take your blinkers off and see that as long as short cuts are taking in care and money saving is the driving force, all our children and young people are in danger and what I most want is NO MORE AVOIDABLE DEATHS. That’s all.
Hear hear. Courage, compassion, common-sense personified.
Well said Rosi
Vince, I do not personally know Sara and I am about as unconnected to anyone politically or otherwise as it possible to be. I read the blog and I do comment. I want to hear why you feel alternative opinions are being silenced. I am a bereaved parent and I am seeking justice for my daughter and I hope in doing so I ensure that no other young disabled person suffers as she did. I want adequate pain relief in end of life care and equality in the delivery of NHS care. If your role is anything like mine was you spend your life protecting your loved one from hurt and constantly strive to secure a safe future for them.You obviously helped secure good provision for your child , tell us how you achieved that and what part the campaign had in its undoing. I haven’t seen propaganda here on the blog ( the only social media I access ) please voice your opinion . Are you saying that a preventable death was tragic now lets draw a line ? As parents we care beyond our own don’t we if we are completely honest. A preventable death cannot go unchallenged.
Dont forget many many parents and families do not have any alternative to these god forsaken units. There is nothing else. If you keep the family member at home you are accused of abuse and neglect, and they take them away anyway. And sometimes at home you just dont have the resources any more, you are beyond exhaustion. And all your prayers wont help
I am beginning to feel a little bit sorry for Vince. I do not know but am guessing that his caring role is getting him down and the reduction of his carers has made him vent his frustration to the person he has been told (perhaps Sloven’s propaganda) is responsible.
Most parents I know who have the unrelenting task of caring for someone with a learning disability gets times (lots of times) when they wish there was some respite from the monotony of listening to the same conversation over and over again. Having to smile and encourage them when inside you are screaming for some peace. We endure all this because we ultimately love them. Feel sorry they will never have true autonomy over their lives and basically feel a need to protect them. No one else will and certainly not the Slovens of this world.
It is Incredible that someone can be so rude and so disrespectful to a bereaved parent. Shameful behaviour. Poor breeding.
poor breeding? that is ugly, a human being is trying to articulate their point of view.The ability to articulate is affected by exhaustion. This gentleman may be having a few hours of uninterrupted sleep and wearing glasses that are years out of prescription, he may have real health issues going untreated in his role as carer, you do not know him. People can be rude and disrespectful and that can come from sheer desperation and is forgiveable. You will not correctly ascertain my lineage from my comments or grammar.
nic yes you are right. Vince, If your circumstances have caused you to hit out and you are usually a compassionate person, especially towards those less lucky than yourself and the bereaved , I am very sorry for my remarks and I mean it.
We have all been here.
When the Stafford hospitals’ massive neglects and much worse were exposed by very brave grieving people, some families whose experience had been safer became aggressive towards the people who had fought hard first to be heard, then for justice and a recognition of value for their dead relative.
Always, when the NHS, LA or any Public Organisation is challenged to do better there will be others who will have had a better or safer experience. In these circumstances most people can see from the evidence that they were probably just lucky and will applaud and join the so very weary sad grieving families who fight on ……………in order to save ours.
And sadly, all the failing of Staffordshire and others, and A&E ONLY get into media now, because the government allows it , as they want to totally privatise NHS, for pure profit, no patient care, so it will be much worse, but they will make sure, the scandals never get out, like our previous Labour gove did,……..
Bloody love the comments on this blog.
The worst possible thing happened to your family.
The next worst is continually battling where our sons and daughters are denied safe care, as we see the end of our own life coming even closer. It is not helped when parents who have obtained, for the present, OK care or have son/daughter still living at home, seem unaware of the unfenced cliff that is growing ever closer to their own son/daughter. Others in this blog have already illustrated that our gratitude for the (rare?)brief respites/good times can leave us all unwilling to rock boats.
But we older parents are aware of the thin ice we skate on each time we go to law to get what our vulnerable daughter /son is entitled to within the law. Each challenge by us is a potential cross on our son/daughters card; when we are gone. Brand promise ‘Wellbeing’ is a mirage seen on only LA paper headings We older parents are aware that we could just settle for some kind of ‘normal’ life for ourselves now; ‘normal’ that is between resolving all the recurrent crises; while we have the strength to resolve them. But I/we know that when we go there will be no one to do this. So as well as doing it all now we use the little strength we have left to fight on for better and safer. I so wish I could say my son/daughter will not suffer for my being viewed a long term pain in the LA’s arse. But I am sadly and wearily committed to carry on being seen as one by them, in the vain hope that by the time I die things may be better for him/her; and that means yours and mine Vince.
Sad, but so true :((
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