Hi all, I need to find out if anyone has heard of or has a community deprivation of liberty order out on their loved one?
My lovely husband has been living with CBD and a rare genetic FTD for 5-6 years now, he is non mobile but can use an electronic stand aid and is sometimes hoisted, he is doubly incontinent and non verbal although I can understand his facial expression.
I am his main carers and get help twice a day from the local hospice, I have declined further help as hate the invasion in our lives and I’m not overwhelmed, I have a nursing background.
He recently had a review of his chc and a social worker. who we never knew existed, attended , she told me they were going to look into getting a DOL order in place in case he makes it to the door and this makes it legal to detain him. I understand the need for this in mobile confused people but feel this is unnecessary, he hasn’t walked for a year.
On looking into it it’s scary as it gives total control to the social care team. There are no safeguarding issues, I checked and he has had no falls or injuries and has perfect skin. I have full health and welfare power of attorney.
Can anyone help please as I am totally devastated by this.
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Blacklabmum
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Hi there ! It certainly seems clear that you're the most qualified person in the picture ! I've found that when other entities get involved , even when they're under the umbrella of "Healthcare" , that they need to be educated , sometimes repetitiously/emphatically about the specifics regarding your husband/patient. There's a tendency for them to make global assumptions. In the case of your husband , you are the expert. And fortunately you're also professionally qualified ! I'm assertive ( always respectfully) , as I need and am very grateful for the services (Hospice in my sister's case) provided . There have been a number of instances where if I had not spoken up and pushed for or against certain measures , the outcomes would not have been in the best interests of my sister/patient. I work well with the Hospice nurses and staff and they know that I am very appreciative of their services , but I'm the authority on my sister when it comes down to it. They know this , and they defer to me. My sister has had diagnosed PSP for over 10 years and is still alive and in as good shape as she can be , solely because I'm qualified and in charge of her care. And we've had more than a few close calls !! It has sometimes amazed me what I've managed to accomplish when dealing with bureaucracies big and small , just by speaking up ! I've sometimes ruffled a few feathers , but was always able to prevail, thank goodness ! The only thing that I'm powerless to change is sadly the long term effect of this devastating illness ! Hopefully, by getting back in touch with those people and being assertive , you'll straighten things out ! And you'd actually be lessening their paperwork 😁 ❣️
Sending warm thoughts and cheer across the Atlantic to you and your husband ! Take care , Elise
Thank you carehope for your reply, I’m sure your sister is still here after 10 years because of your perseverance. Sadly too many people who don’t know the system get walked over and I didn’t realise how much gaslighting and unjust things go on until we had to be in the system.
Hi again Blacklabmum ❣️ Don't ask me where 9 days went since you wrote about what the "tunnel vision on a mission" Social Worker had wanted to institute regarding your husband ; (the DOL order ) . It's so frustrating , time consuming , and tiring having to deal with unqualified people who have the title but way too little knowledge base /experience . I hope that you were able to get saner heads to prevail asap ! You're the qualified resource person they should consult when they are dealing with matters related to CBD and FTD ! Wishing you and your husband peaceful days and smooth sailing with the healthcare system !! Take good care of yourself also !! Best wishes , Elise
Hi Elise, thank you, I have been informed that the SOLs are not law yet so social worker will have to still go down the DOLs route which means they can’t implement it without going through the court of protection especially as I’m not agreeing to it, it has been suggested that it will be thrown out of court as I have full LPA. Important note for all, if any dreadful illnesses such as this knocks on your door please arrange LPAs early on so that someone you trust can protect you and be your voice. BW Mandy x
Hi. This certainly seems totally inappropriate . I facilitate a Carer's Support Group and one of our carers had to deal with a similar situation as her husband was bed bound. She made a formal complaint to the head of our local Adult Social Services and involved PALs and their GP and eventually did not have to complete the DOL. I am sure that the PSP association would support you. I know that this is all you want now, on top of everything else so good luck and big hug. AliBee
Hi AliBee, thank you for your help, everyone I have spoken to has said the same, it’s definitely not usual , it would be laughable if it wasn’t so serious all the social worker keeps saying is it’s only in case he goes out the front door, I would love to find him out by the front door. It’s certainly added to my stress xx
Hi Blacklabmum, I agree with AliBee, contact the PSP Association (pspassociation.org.uk) Helpline. You can the talk to someone knowledgeable, about your particular circumstances & get a clearer perspective. All my very best wishes 🙏
Oh my gosh, I am sorry to hear of your and your husbands situation. I have never heard of this order but wanted to reply to let you know I think your concerns are 100% valid.
As a PSP carer, this disease taught me many things. It makes us think carefully about safety, comfort and dignity for the patient. We never ever ever want to take away a moments dignity for the patient because the disease itself will do that on its own. My view is that if you have the safety elements well covered, your husband is not likely to walk out the door and your husband and you are not likely to be exposed to danger resulting from a walk out the door, then an order as you have described doesnt add anything of value to your day.
Perhaps it is something that is from a checklist, perhaps they see frontal temporal dementia can come with this disease and think the order is appropriate because of that but facts and circumstance also have to be taken into account.
Stay strong and I am sorry this disease has come to your door.
I agree with others. The social worker will have clocked the FTD and thought about previous cases of advanced dementia and not understood the mobility impact of the PSP. Especially as you have power of attorney you can push back and bring in the healthcare people involved to back up that there is zero risk of escape.
Hi all, thank you for your helpful comments and support, I am lucky that I have an amazing palliative nurse specialist involved, she has investigated and has spoken to the relevant people, this is how I understand it,
DOLs changed last year to SOLs ( Safe guarding of Liberty) the Mental Capacity Act also changed to allow for this. It is now seen that all people who lack capacity and who have a mental disability and are under continuous monitoring such as CHC have to have a SOL in place, most authorities are starting to implement this however there is a huge back log and is going to take some time to do. If there are objections it will take longer as it has to go through a hearing with all interested parties involved. Lack of capacity obviously has to be proved and they then have to prove it is in the persons best interest although if there is no objections it can be put in place quickly.
Andrew is assessed under the complex needs pathway, I’m not sure if this has anything to do with it,
I am still unhappy about it and will oppose it as I feel it is just a bureaucratic exercise and seems unfair to impose what I see as a blanket order.
On a somber note It also means that anyone who passes away under this order has to be referred to a coroner which I feel will add to my grief as sadly we all know the inevitable outcome of this dreadful illness anyway.
Please look into this yourselves, I apologise if I have got anything wrong, hopefully I have and I’m sorry if I have come across as a scaremonger this is not my intention. Please inform me if you find out differently.
On a positive note, I have been assured there are no concerns surrounding my care.
Hi Blacklabmum I don’t like the idea of Social Care having control. I would have thought with you having power of attorney in place it would be your decision to make not there’s. 💜
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why don't people understand a carer can be tired? 
Hello from Indiana, USA
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