Advice re brain damaged adult

Loretta

I am trying to help a friend. 9 years ago her son, step son actually but she has been his Mum for years only mention the step bit because that causes problems too, was involved in an accident nearly died and has severe and permanent brain damage. Husband 'can't cope' and she seems to have taken it all on and when she queries anything with social services which they don't like the remark is that she is the STEP mother so really it is nothing to do with her!

Is there an organisation, charity, advice line anything like that where she can find help, advice, support not just for her and her family but for him. Is there something like a supporter for him, an advocate, a representative to make sure that he is getting the best help and care available and help with important decisions.

Sometimes social services tell her and his very involved and supportive family what is happening and sometimes they don't.

Latest problem, he is living in a shared house with support which is working quite well, area he is used, friends,neighbours, support network, very convenient for family, what he is used to. Last friday am SS phoned her, at work to say that they think he ready to live on is own with support and they wantd to show him some flats that day and could she and his father come. She said she could not just leave work at a moments notice, it would have taken her 1 to 1 1/2 hours to get there if she did, and she asked if they could arrange for one day next week and was told 'fine' which she thought meant yes they would. Her son phoned Friday evening to say SS had found 5 flats to show him and it made no difference to him which one so he just said yes to the 1st one and signed up. This flat is about 15 miles from where he is living, a small village, no transport, he has just started using a bus to their house occasionally when he can manage it, no friends, neighbours, support or anything. He is not aware at all about what is happening, could not live independently has no understanding that this is completely unsuitable and how isolated he would be. There are case conferences every 6 months which my friend and her husband always attend and sometimes his brother and sister attend , the whole family are in close daily contact with him and he is very much included in the family. She knows most definitely that he is not ready for this and probably never will be. How can he be allowed to make this decison and to 'sign' something.

This is not an unusual sitution with SS, there seems to be no consistancy, his family do most of the caring and take responsibility for him and now and again something like this happens without them being included. She is at her wits end and des not seem to have had any good advice and he does not seem to have anyone representing him, it seems the family don't count

Can anyone point me in the right direction for some help and advice?

Savvy_Sue

Headway

Does anyone have power of attorney for him? If she did (and it sounds as if she cares enough for his best interests!) then that would get over the "only his stepmother" bit. Or maybe one of his siblings.

Look at this link for details about that.

elsien

Mental capacity act - new legislation that has just come in, so not all depts are fully up to speed.
If your relative lacks capacity to make this decision, he is entitled to an independent mental capacity advocate.

Quote from the site.
"Service that helps vulnerable people who are facing important decisions made by the NHS and Local Authorities about serious medical treatment and changes of residence."
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/MentalCapacity/index.htm

(Also an easy read leaflet you can send off for.
http://www.publicguardian.gov.uk/docs/making-decisions-opg606-1207.pdf)

You do not have to go through social services to access this - if you look on the council website for where your stepson lives, you should be able to track down a phone number and contact the IMCA service directly.

Also ask social services if they have carried out an assessment of capacity under the act - if they have decided he is capable of making the decision then you can query how they reached this conclusion - they have to record this.
If they have decided he is not capable of making this decision then they must hold a best interests meeting for this decision to be made on his behalf, which your family as his next of kin should be involved with , as best practice.
Sounds to me as if they are driving a coach and horses through the guidelines.
Good luck - if you quote the legislation at them and sound as if you know what you are talking about they may take more notice of you.

However if your stepson is more capable than you think ( and it can happen ) he does have the right to make unwise decisions even if you don't agree with them - making mistakes is how we all learn to things differently the next time.

Edit - just realised it's not your family, but am too idle to go back and change the post!

melancholly

i second headway -they do great work and the people i have known who worked there were fantastic. it sounds very stressful and i hope that they can sort something out.

elsien

About the IMCA service






A new service to support vulnerable people facing important decisions.

• Background to the IMCA service
• Making decisions: the Independent Mental Capacity Advocate (IMCA) service
• Download IMCAs appointed contact sheet - 19 May 2009 (PDF, 236K)

Click on the download contact sheet, and it gives a list of phone numbers for round the country - get your friend to give them a ring.

The act doesn't just apply to learning disabilities but to anyone who's decision making is impaired whether temporarily or permanently due to injury or illness, which head injury would definitely fall into.

Loretta

Savvy_Sue wrote: »

Headway

Does anyone have power of attorney for him? If she did (and it sounds as if she cares enough for his best interests!) then that would get over the "only his stepmother" bit. Or maybe one of his siblings.

Look at this link for details about that.

It seems that since this awful accident has happened they have had no practical advice of any value. The 2 younger children were in their teens when this happened, her daughter doing her GCSEs at the time and apart from it being a total disaster for him it has also been a disaster for the rest of the family and has affected them all profoundly for the rest of their lives. I had no idea that not only did the victim not receive any practical advice the family certainly don't they seem to have been treated as if it is really nothing to do with them and that they have not been affected at all.

My first thought was if there had been one of these huge compensation claims there would have been some sort of guardian involved but there isn't and his care seems to have been very fragmented and inconsistant.

Thanks for replying I will follow all that up

Loretta

elsien wrote: »

Mental capacity act - new legislation that has just come in, so not all depts are fully up to speed.
If your relative lacks capacity to make this decision, he is entitled to an independent mental capacity advocate.

Quote from the site.
"Service that helps vulnerable people who are facing important decisions made by the NHS and Local Authorities about serious medical treatment and changes of residence."
http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/MentalCapacity/index.htm

(Also an easy read leaflet you can send off for.
http://www.publicguardian.gov.uk/docs/making-decisions-opg606-1207.pdf)

You do not have to go through social services to access this - if you look on the council website for where your stepson lives, you should be able to track down a phone number and contact the IMCA service directly.

Also ask social services if they have carried out an assessment of capacity under the act - if they have decided he is capable of making the decision then you can query how they reached this conclusion - they have to record this.
If they have decided he is not capable of making this decision then they must hold a best interests meeting for this decision to be made on his behalf, which your family as his next of kin should be involved with , as best practice.
Sounds to me as if they are driving a coach and horses through the guidelines.
Good luck - if you quote the legislation at them and sound as if you know what you are talking about they may take more notice of you.

However if your stepson is more capable than you think ( and it can happen ) he does have the right to make unwise decisions even if you don't agree with them - making mistakes is how we all learn to things differently the next time.

Edit - just realised it's not your family, but am too idle to go back and change the post!

Great information thanks for that I can always rely on the generous people on here to come to the rescue.

I said to her today that there must be someone who should be representing him it seemed strange that everyone seemed to be just muddling along especially with such huge decisions. My friend did not mention any of this legislation and I am sure she knows nothing about it. She has become so worn down over the years, first with the shock of the accident and then dealing with everyone else affected by it as well as wanting the best for him and now seems to be the one dealing with all this single handedly. She is a very caring person and worries herself literally sick about him but is not very forceful and would never 'insist'. armed with all this information I am sure she, and I, will manage to make some changes for the better.

There is no way he is able to make any decision, he is severely brain damaged, very unpredictable and in these circumstances he is a danger to himself and, her biggest worry, a danger to everyone else too

Loretta

melancholly wrote: »

i second headway -they do great work and the people i have known who worked there were fantastic. it sounds very stressful and i hope that they can sort something out.

Luckily have had not had to deal with a relative in this position but I have heard of Headway I just had not thought of them. I wonder why no one has suggested them to her. We will contact them tomorrow,thank you

belfastgirl23

Just to echo what the others have said, headway are great.

I hope your friend gets sorted out Loretta!

elsien

A bit more info on the Mental Capacity Act for you if you want to query his capacity to make this decision.
(This is a very simplistic version, but may be of use.)

You cannot say that a person does or doesn't have the capacity to make decisions as a general statement.

Capacity has to be assessed on each individual decision, so someone may have capacity to make some decisions and not others, depending on their abilities and circumstances. Capacity can also change from day to day, as with some illnesses (eg mental health or dementia) people can have good or bad days.

To be capable of making a decision, they need to have a general understanding of the decision they need to make and why they need to make it.

They need to have a general understanding of the likely consequences of making or not making this decision.

And this is the really important bit:
Is the person able to understand, retain, use and weigh up the information relevant to the decision?

So what social services (or the people working directly with him) should be asking themselves is whether your friend's stepson fully understands and can balance the advantages and disadvantages of moving to somewhere quiet with little transport, no support network etc. If he can't do that, then he shouldn't be making the decision - he can express his preferences, but a best interests decision will then be made on his behalf, which should involve the people in his circle of support, and those who know him best ( ie also his family, unless there are good reasons why not.)
They need to show that he can communicate his decision, and they have taken all practical and appropriate support to help him make the decision for himself, and also who took part in this assessment.

The other point to remember is that the person doesn't have to retain the info for any length of time; they just need to understand the decision at the time they make it, even if they've forgotten some of it by the next day.

Obviously without knowing the person it isn't possible to comment on their capacity, but in your friends situation I would say she has a strong case for querying exactly how his capacity to make this decision was assessed, and by whom, and why his family weren't involved at some point.

If you want to know anything else I'll do my best, but this is all a bit new to me as well, as it only came in in April.

Edit - if it was me working with him, I'd have drawn up a list of criteria for the accommodation taking into account his needs and preferences, and shown him flats that fitted within that - how did the people working with him choose the flats to show him in the first place?

Loretta

elsien wrote: »

A bit more info on the Mental Capacity Act for you if you want to query his capacity to make this decision.
(This is a very simplistic version, but may be of use.)

You cannot say that a person does or doesn't have the capacity to make decisions as a general statement.

Capacity has to be assessed on each individual decision, so someone may have capacity to make some decisions and not others, depending on their abilities and circumstances. Capacity can also change from day to day, as with some illnesses (eg mental health or dementia) people can have good or bad days.

To be capable of making a decision, they need to have a general understanding of the decision they need to make and why they need to make it.

They need to have a general understanding of the likely consequences of making or not making this decision.

And this is the really important bit:
Is the person able to understand, retain, use and weigh up the information relevant to the decision?

So what social services (or the people working directly with him) should be asking themselves is whether your friend's stepson fully understands and can balance the advantages and disadvantages of moving to somewhere quiet with little transport, no support network etc. If he can't do that, then he shouldn't be making the decision - he can express his preferences, but a best interests decision will then be made on his behalf, which should involve the people in his circle of support, and those who know him best ( ie also his family, unless there are good reasons why not.)
They need to show that he can communicate his decision, and they have taken all practical and appropriate support to help him make the decision for himself, and also who took part in this assessment.

The other point to remember is that the person doesn't have to retain the info for any length of time; they just need to understand the decision at the time they make it, even if they've forgotten some of it by the next day.

Obviously without knowing the person it isn't possible to comment on their capacity, but in your friends situation I would say she has a strong case for querying exactly how his capacity to make this decision was assessed, and by whom, and why his family weren't involved at some point.

If you want to know anything else I'll do my best, but this is all a bit new to me as well, as it only came in in April.

Edit - if it was me working with him, I'd have drawn up a list of criteria for the accommodation taking into account his needs and preferences, and shown him flats that fitted within that - how did the people working with him choose the flats to show him in the first place?

Any lay person without any medical knowledge of any kind would know immediately and obvously that he has no understanding of anything at all, I know this sounds blunt but there is really no doubt at all. I am not talking about good days and bad days here, I hope you understand what I mean.

It is quite clear that the people working with him and they come and go, some have seen him a couple of times and some not at all, there is not 1 consistant person at all, all exoerts though seem to decide things without any rhyme or reason and no discussion with his family who have daily contact with him and are greaty involved in his life, SS seem to popup now and again and either interfere or cause chaos without any proper reason. I am trying to be clear about the situation and to leave no doubt about how the situation is.

If they had any idea about him at all they would not be offereing him a flat on his own at all let alone one that is in a small village 15 miles from where he is currently living and has some idea , although very limited about, I can only presume that they have a flat available that no one else wanted, there seems to be no other explanation.

The family were involved, SS phoned on Friday am to say they could come NOW and look at flats and then it was all over.

I was very interested in the information you sent me. I gave it to her this morning and she read it quickly, she has a week off this week and has taken it home to read thoroughly but it was intersting that she knew nothing about any of this and even with a quick glance, and being the sort of person who never thinks ill of anyone, immediately saw that she has not been given any useful or practical advice in the past 9 years, has struggled with all aspects of his terrible accident, has struggled with doing her very best for him, she has always been the main one in the family for this, and has not been advised in any way and has very much been dismissed as 'step mother' and 'father not much interested' he is but has not coped at all with this, his brother and sister 'nothing to do with them really' which has made social services job and failings easy for ss. I hope this makes sense but I have become quite cross about this sitation. I knew a little but until yesterday when she broke down while telling me I didn't realise how bad it all was, and I feel should have spotted it, I presumed like most people that with someone this badly disabled there was a lot of help and support out there and how badly him and his family have been so let down and neglected.

Having read your information briefly we have the beginnings of a plan and as I am not sch a really nice, kind, patient, understanding person as she is I will make sure that someone listens and something is done here

SS seem to act on a whim regardless of how it affect everyone in fact I don't think they even think all this affects anyone and I amazed by the arrogant and patronising way she has been treated and dismissed, God help anyone in this situation who does not have close family support and no one who cares about them I dread to think what happens to them.

Thank you for your help, I wll let you know what happens but I am determined that things are going to change and he is not going to continue to be treated as a lump of meat, he is still a human being although a very damaged one and he needs more respect and help not less.

When I get annoyed I get things done!