Who has the last say?
- By Chorlton
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Mon 6 Aug 2007 16:34
We are parents and "carers" for our son, born in 1971 with cerebal palsy, and whilst he is a bright, intelligent soul, he is severely physically handicapped. He lives at home with us and most weekdays, he attends a day care centre.
A few years ago, his day care centre called in a speech therapist (without our knowledge) who imposed certain procedures for the day centre to follow when feeding our son. We were not consulted nor were we made aware that of the intention was that the instructions applied at home, and no attempt was made to follow up.
It's a long story so I'll skip some of the detail, but, recently, the speech therapist became aware that we were not following the instructions at home. And this had led to us being accused of "abuse" at a POVA strategy meeting at which other kinds of "abuse" were levelled against us. We should point out that neither we or our son attended the POVA meeting. And to date, we have received no official word about the POVA meeting. We have complained, we have requested papers and we are seeking legal advice on this issue. However...
Now we have received revised recommendations following a recent assessment (of which we had no prior notice and we did not take part).
At the foot of the recommendations is a paragraph, in red and in bold, which demands that "As [our son] has had an eating and drinking assessment by a healthcare professional it is the legal responsibility of all who support him with eating and drinking to be aware of and follow these recommendations".
So one question for folks on this forum is, given the assessment and recommendations were carried out without our (or our son's) prior consent, is it correct that an unknown "healthcare professional" can impose a legal responsibility on us as full-time carers of our own son?
Has anyone had a similar experience?
Replies
- By meg mackenzie
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Re: Who has the last say?
Tue 7 Aug 2007 10:09Sorry to hear of your troubles. I have no similar experience to share, but it sounds like the scenario where a group of boys are given the rules of football to study, then put out on a rugby pitch with a rugby ball and expected to play a game!
How can you possible help your son if you are not included in decisions and assessments?
My dad is 87 and would not even have a passing chat with a anyone from SS without a witness! God forbid they would try to have a meeting without me there..........They did try once, but I found out and walked in with Dad. Their faces were a picture, but it is his choice so nothing they can do about it.
- By Idler
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Re: Who has the last say?
Wed 15 Aug 2007 10:22Your son has the last say.
It is incredible that a health care professional or day centre staff could think that they can impose feeding methods on him without his consent (unless a court orders it in his best interests).
If, and it's not clear from your message, he does not have the mental capacity to make an informed decision on his own, then the Mental Capacity Act needs to be followed. It is clear within that Act that you, as parents and carers, need to be involved.
If he does have the mental capacity to make a decision but does not have the communication due to his cerebal palsy, then he has an absolute right to be consulted in a way in which he can participate and, once a decision has been made by him, he has a right to be helped to communicate that decision to all who are involved.
With the info given, what has happened sounds outrageous but I assure you, sadly, is not an isolated incident.
Can you get to a local carers centre or advocacy service to see if someone can help you through this. Go to a Citizens Advice Bureau if you need help finding the right person to help you to assert your son's rights.
Have a look at the Mental Capacity Act booklet Making decisions A guide for family, friends and other unpaid carers.
POVA is there to protect people's best interests when someone is at risk. It should not be used as a weapon against carers when health care professionals have not followed proper proceedures to include the person concerned or their carers in the first place.
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By chenrezig
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Re: Who has the last say?
Sun 26 Aug 2007 19:49Dear Chorlton,
Maybe you've already got the booklet or had a search on the 'net yourself but I found this link to relevant publications...
I hope thing work out ok very soon.
Take Care
Liz
- By Chorlton
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Re: Who has the last say?
Sun 2 Sep 2007 18:53Thanks all for your replies and support. The issue is now subject to an independent enquiry. This is welcome but it has created a wall of silence between us and the "others" so now we do not even know if we are able to continue to sign for our son when he has dental treatment - it seems one part of the local Trust is quite happy for us to make important medical decisions for our son, whilst another part is accusing us of abusing our son. Meantime, our son needs our support, as ever, so we will continue to be there for our son, as good parents always are, forever and ever, undying, solid, 24x7. We have no interest in pay, career, promotion or professional pride, our interest is simply love and support for our son. No professional in the world can offer that to our son.
- By Chorlton
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Re: Who has the last say?
Mon 28 Jan 2008 07:24We are now able to report that the independent enquiry found in our favour and we have been cheered by the reaction of the local Trust who have apologised unreservedly, put into place an action plan and recommended improvements in how professionals carry out assessments and meetings. Some of the actions remain outstanding and progress on others has been slow but at least, at the moment, it seems to be going forwards. And our son has, at last, had his annual review (only six months late!). There are still signs of misunderstandings so we will need to be on our guard.
- By laptopbob
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Re: Who has the last say?
Tue 29 Jan 2008 13:41If I were you I would also dump this matter onto your MP. Let him sort it out - they are the people in overall charge making the rules - let them get into the real world.
Give the problem back from whence it came.
Good luck
- By Chorlton
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Re: Who has the last say?
Tue 29 Jan 2008 17:45Thanks for the suggestion, laptopbob. As it happens we engaged with our MP from the outset and he has been in touch with the CEO of the Trust. We are about to provide an update and a request he contacts the CEO again to gain support for the recommendations mentioned in our last post. Sadly our MP is a low profile guy in the "opposition" so is unlikely to influence changes to the rules - yet.
- By kerry
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Re: Who has the last say?
Wed 30 Jan 2008 00:21Hi Chorlton,
Thank goodness you are intelligent and brave fighters!
How DARE they treat you or your son this way.Perhaps, lets hope, they have learnt their lesson and wont mess with you again in this despicable manner.
They are sooooo in the wrong here.
Good for you for your strenght and determination for the sake of your son. Thank goodness he has you as parents!
best wishes
Kerry
- By aggiebaggie
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Re: Who has the last say?
Wed 30 Jan 2008 21:11It's amazing that throughout the period of caring for our disabled children we have to constantly tug our forlocks, attend what THEY say and be thankful for the scraps we're given, sadly things don't improve if you win a battle .A friend's daughter won compensation only to have it put in the court of protection (mental healthact) and now has to ask more faceless beauraucrats can they have ,can they do.
Maybe we should all claim to be foster carers to our off spring as they seem to be better treated and informed.
- By kerry
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Re: Who has the last say?
Fri 1 Feb 2008 19:01hi aggiebaggie,
so true!
I have a friend in the same situation- they fought for 8 yrs to get compensation for their very severely disabled child. (hospital blunder) and the amount they ended up with wasnt nearly enough
they had to apply to the courst for everything and explain in great detail why it was necessary for the child!
she said she wished she hadnt bothered.
sadlt the child has since died and as far as i know the money has stopped (they worked out til she was 25 but she wasnt that old when she sadly passed on)
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