Very upset: Morning all.looking for some advice... - Headway

Headway

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Very upset

Dogsabighelp profile image
Dogsabighelp

Morning all.looking for some advice.nurse rang me last night with update(nurse who's accent I don't understand) she tells me I should consent to deprivation of liberty form( dol). Well I got really upset what is this I asked?anyway another senior nurse rang me back said that its a usual thing,son is wearing mitten as he is constantly scratching/ rubbing his face.a sign,she said that he is " getting better" more aware of what's going on etc.I said they must understand that I havnt seen him in 4 months and only twice in that time had anyone bothered to put phone to his ear.so they put phone to his ear...it was horrendous. All I could hear was hissing/ gurgling sound.I spoke to him for almost 10 minutes mostly talking rubbish but telling him e/ thing would be OK.I think,when the nurse took phone away they were restraining him even though they said he was calm and OK.I can't believe how upset I got and am frankly terrified at what I will do when I actually get to see him...

23 Replies

Hi I'm sorry that communication hasn't improved. This isn't how requests like this should be carried out. One of the medical team (not knocking nurses, but I am talking about a Dr). Deprivation of liberty is a medical equivalent of the mental health act. But it can be far reaching. It is never taken lightly, or shouldn't be taken lightly.

It can be used to keep someone in hospital and receive treatment that they are not cooperative with if it is deemed to be essential to protect someone from harm or assist in saving an individual's life.

It cannot override someone's belief or culture just because someone doesn't understand or believe the same.

It must state exactly what liberty is being restricted and on what grounds. It must demonstrate that the individual does not have capacity to decide for themselves.

A hospital can apply to a court for a judgement to deprive, but this is rare.

I don't have enough knowledge around this being used in a medical environment, most of my knowledge is around the MH Act.

I do know that you must see the document as a physical signature is required. Treatment can proceed prior to signing as long as it is responsible that consent will be granted.

The least restrictive deprivation to achieve the required results must be used (mitts are similar to what might be used with babies to stop them scratching, obviously a bit bigger for adults).

Consent of a next of kin for a person over 18 years of age, does not exonerated legal responsibility of liability of treatment as a lay person is not expected to have expert knowledge.

You could contact PALS at the hospital, the C.A.B. or Headway for more accurate information.

You say that you got the impression that your son was being restrained as your call with him finished. Anyone expected to carry out any form of physical restraint must receive regular training in restraint as a minimum this should be annually. This is my area of expertise.

I don't think on this occasion I will settle your worries, but hopefully it gives you some understanding.

Ian x

I don't like the sound of this. I get the impression that hospital staff are trying to railroad a desperate and forcibly distanced mother to sign away her son's rights, as though it's of very little consequence and would make their job so much easier. However, for you and your son, it's a monumental decision.

I cannot imagine what you're going through, but my gut instinct having read your post is to suggest that you sign nothing just yet.

Your son is safe where he is, regardless of what medics might be suggesting to you. Take a step back and give yourself some time to think.

As well as heeding Pairofboots excellent advice re further guidance, take a look at this website:

gov.uk/emergency-court-of-p...

I suspect that you do not have a Health and Welfare power of attorney in place whereby you can act for your son. Now may be a good time for you to ask the Court of Protection about emergency powers so that you can make decisions on your son's behalf on a step-by-step basis through the immediate crisis. In other words, you do not hand over your son's decision-making power to hospital staff. Instead, you take full control on behalf of your son and every decision medics take, every move they make regarding your son must go through you first for approval, by law.

I was my mother's Legal and Health and Welfare attorney and the power I had to challenge decisions that I did not understand or agree with while she was hospitalized were phenomenal. Everything the doctors discussed about her case; every decision they considered, everything they wanted to do to her had to come through me first for approval. Attorney is a very powerful tool.

There's a telephone number for the Court of Protection on their website. It's 020 7421 8824 10am - 4pm. and there's an out of hours number too.

You might find it helpful to talk it through with them to see what your options are. Anything other than emergency powers while your son is incapacitated might take quite some time to implement (this is for his protection), but it can be done.

Meanwhile, keep going; you're stronger than you realize.

What happens if you just show up and demand to see him? Is he listed as critical? This is horrible! The kidnapping of our families. This has to stop. Who is fighting for families? Get a lawyer get some advice on how to get in there.

I had a deprivation of liberty put on me or dol for short it was put on me when I was put in the medically induced coma it meant that the Drs had to inform my son of everything as he was my next of kin and he had a say in every decision made and he made all the right ones,so this might be a good thing and give you more information and more say in matters

Don't worry about the face scratching or the mitts I had these too I kept trying to pull my trach out I pulled my lumber drain tube out 3 times it's quite normal to the nurses it's all part of the awareness process for us feeling our faces pulling at things so the mitts are standard the good thing is he is feeling more,when you see him just show him the love that comes through in every post you make❤️

Dogsabighelp profile image
Dogsabighelp in reply to jodac

Thanks jodac,have spoken with headway earlier tried without success to contact consultants secretary,and left msg for hospitals p.a.l.s team.things have not been handled correctly regarding our situation.I have to see my boy no matter how upsetting it is,but they need to prepare me not do what they did last night.poor lad must be confused/ terrified.I won't stop until I'm satisfied all is being done for him

jodac profile image
jodac in reply to Dogsabighelp

That's the attitude,confusion and fear are part of the process after a brain injury but hopefully like me he won't remember much about it afterwards,I'm surprised the dol wasn't put on him sooner mine was put on straightaway it basically just meant I wasn't capable of making any decisions regarding my healthcare it then went into the hands of the Drs and my son but they worked well together ,speak to the p.a.l.s team the good thing about a d.o.l is that there has to be accountability for every decision taken that it's the right one let the p.a.l.s team know exactly what you expect

Sadly Dogsabighelp they tend to put DOL on brain injury which can be totally normal behaviour, it means he maybe becoming aware but brain presents this in many cases. Same with my husband put on DOL I didnt know until after, but 8 days later after behaviour so frightening, poor staffing, hospital in fear of first covid pandemic, he was transferred to another hospital they couldn't cope with him, same poor standards in second hospital then enough evidence put to them, they are causing him more harm/risk I just picked him up 2 hours later they took it off, I was so angry, he was actually obsconding at this point anyway with Male staff frightened to stop him. Even when home they did cognitive assessment on week 11 at home he failed, then further 3mths down line another cognitive assessment carried out only one test, we never had outcome and not had one since were now 12mths 2wks.

What I'm saying dont let that DOL's word think it's all or nothing, it can be removed quickly from my own experience and progress is slow but will you see improvement whatever the paper says.

However, bloody give them an ears full and now is the time to get that legal advice in place and take action.

All the best with this, my chest sinks reading this awful pain your in but stay strong.

DOLS arrgh. My Mum had one over dementia by a stupid council carer, (they were totally wrong over the facts but lied and closed ranks). My Mum was then stuck in a care home and sadly she never got home again.

Tried going legal but idiot solicitor said it would take too long to get it overturned. He has since been sacked and will never use that practice again.

A senior partner of another practice confided his mother had a not dissimilar experience with a stupid council care worker in a different county and she passed away before even he could get it sorted legally.

When I was in hospital I just wanted to get out ASAP. I threatened to walk out, to which I was told they would get a DOLS order thinking I wouldnt know what one was. Wrong!

I immediately retorted they would find me at the BBC and that I would counter them with unlawful kidnap. Ha!

Soon after they let me home, probably glad to be rid of me! I am not to be messed with.

I have always disliked injustice and have made it known that I will never accept a DOLS order whatever they or some ignorant judge might think.

So....you are not alone. Just dont let it get to you. As said there are ways around these things but it will require persistence.

Here’s a virtual bit of support and love. Hugs too. Keep up the good fight.

Praying you succeed in the end.

❤️

Dogsabighelp profile image
Dogsabighelp in reply to Shreds

Sorry pressed wrong button my apologies I'm so tired x

Exhaust profile image
Exhaust in reply to Dogsabighelp

Can not imagine what you are going through ... my daughter was in ICU after a serious RTA resulting inaTBI . Me husband and siblings did not leave her side for 3 months ... I can not imagine being refused that freedom for her and us !!! The mental health fallout from covid will out way the sad deaths !!! We had a fantastic legal team ,thank god ,but have had the threat of DOLS hanging over us for 3 years . We are NOT siging our daughter over to anyone else all the time we are fit ,well and alive . Stay strong and stick to your guns . Also you should demand access to seeing him, for his recovery ,health and wellbeing !!!!

Dogsabighelp profile image
Dogsabighelp in reply to Exhaust

Thanks e for reply.spoke with headway y/day,got some clarification on dol situation.also with both doctor and senior nurse last night.I'm waiting for a call from pals also today.I'm going to outline the various issues I have in no uncertain terms.I find it suspicious to say the least,after so many weeks of limited communication I'm suddenly getting more calls?I will also( tried all afternoon y/day) attempt to get through to head doctors secretary.I seem to be going round in circles its hard to stay focused...

My son was on a dols 8 weeks ago ,he had mittens etc, cant walk still, I haven't seen him now for 4 weeks and last week they rang to say he was off the dols as he had mental capacity to make decisions, I thought great! But this week he ranted he wanted to leave hospital and they said because he isnt on a dols he can !!!! Seriously??? He has half his skull out, still mixes stuff up, cant go the toilet without someone to put him in a wheelchair but he can leave hospital??? Just like that? Managed to get to talk to him on phone he was so sad,and managed to get a one hour visit for his dad to calm him down, if he left hospital he would be dead in a week. I wish he was still on a dols, I really do, so I wish you luck but please talk to pals about the dols

Thanks for your reply.looking at the responses on here plus info from hospital I think allowing the situation is probably correct at this time.Im so sorry for your situation,in all honesty I can see myself in your place in the future,thanks for advice my best wishes to you allxx

jodac profile image
jodac in reply to Dogsabighelp

It seems to be that when we wake up the first thing we want to do is escape the hospital regardless of our injuries because I had the dol I had 2 security guards doing 12 hr shifts because the nurses were too busy to chase after me constantly, at the time I thought I was perfectly sane looking back now 2 years later I realise I was far from it but off I'd go in my pjs slippers and handbag the fact the whole of the left side of my face was fractured,3skull fractures 4 rib fractures 2 black eyes and a wrist in a cast never entered the equation the need to leave was stronger the dol worked for me

My husband had a DOLS order applied when he was in neuro rehab. I encouraged it as the more mobile he became, the bigger flight risk we had. He would constantly threaten to escape but had no insight into his injuries.

My concern was that if he escaped or refused treatment that he would lose the opportunity to have valuable rehabilitation, which he very much needed.

It was only in place for a short time and no issues with it being lifted.

The inpatient rehab bought so much of my husband back when things looked so very bleak at one point.

I am so sorry you are having such a terrible time. We were fortunate that he came out just before the 1st lockdown. I can’t even imagine how hard it’s been for you.

Stay strong and follow your gut instinct. x

Dogsabighelp profile image
Dogsabighelp in reply to S21NTE

Thankyou for sharing with me.I'm thinking the pros outweigh the cons regarding my situation at this point.its very interesting to listen to others experiences,has helped me enormously. People just don't get it until they are in it,I've never known a time when I've felt so scared and helpless xxx

Where are you based if you don't mind me asking. We were told that visitors not being allowed in is one thing. However a carer can be allowed in where there is a need, distress etc. So you would no longer be a "visitor" you would be there in a different capacity. I would look into it possibly? Though I know the feeling of "another thing to chase up". Not to mention that you will have your own emotional battles going as well. But if you were there in the capacity of being his carer you would be given the opportunity to help calm him and actually see what is going on in there maybe?

Dogsabighelp profile image
Dogsabighelp in reply to ored13

That's a very good point o.son is in James cook Middlesbrough.not a chance of visit as he still in h.d.u though.once moved to rehab centre then I should be able thenx

ored13 profile image
ored13 in reply to Dogsabighelp

We'll that's good. I take it he's on the list to be moved. Can't help but think that these blanket bans on visiting are really not helping in this sort of a situation. We would not go into the hospital to"visit" we would be there as a vital bit of support that staff can only give in a certain capacity.

My partner has a DOLS in place, and has since very early on, it's not been an issue. Originally because he had to wear a glove to stop him pulling vital tubes, I don't think I would manage to make every decision for him, life is hard enough. Take care x

And, I had a really long conversation with the rehab place about their poor communication. Lovely lady said she would raise it in the MDT meeting and I'm going to put how I feel in writing to them. He is due to move to a more permanent rehab place next week so I am really hoping they are better.

Because of not being able to see your boy, poor communication from hospital for 4months, this has added unbelievable stress with them not explaining to you about DOL. I hope you continue with PALS support especially with video calls commencing soon. Sadly mittens, restraints is common but it is used to protect your son and staff supporting

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