Deprivation of Liberty Order for Daughter

Bill568

My friend “D” has a 31 year old daughter who is profoundly mentally and physically disabled. She has lived at home with her mother and brother since her late teens. She is cared for at home 24 hours 7 days a week by a care agency, with 3 days a week spent at a day centre. The family house is fully adapted to her needs. The care package was originally put together by the local authority, however a few years ago was transferred to a “health” package rather than a “care” package. Notwithstanding, the level of care from the agency and day centre has remained consistent through the years.

D received the below letter in June and subsequently received phone calls asking her questions about her daughters health and capabilities. D is a lovely, caring and remarkable person. However, she falls into Martin Lewis’ 10% or people who are not up to coping well with the modern world.

Today I happened to be with D when she received another phone call from the letter writer and she asked me to take the call. The call was to confirm that all had now been completed and that today a Deprivation of Liberty Order was being sought from the Court of Protection.

I am concerned that such an Order is being sought behind the back of her mother and would question whether such an order is appropriate. On the other hand, it may be something which is entirely normal and required so that the CCG (or it's replacement) can continue to fund care. D is concerned that it may be a prelude to making changes to the care arrangements currently in place.

Does anyone have more knowledge?

TBagpuss

It soundsas thoughthey are looking a things that might be nexessary but that she can't agree to because she lacks capcity - so for instnace that might mean that if they were to physically prevent her from leaving the day centre they would technically be  interfering with her liberty. Giving medication which affects her behaviour, particuarly anything which calms her down, can also be n interference with personal liberty which requires an order to make it lawful 

However, normally the applications would be here someone lives in a care home or hospital, so your friend might want to clarify whether they correctly apply if she lives at home , or what the specifc application is that they are making (I think there are applications which can be made in avance if it is likely that someone will need togo into hosptialand may need to be sedated or otherwise restricted. 

From what I can gather, there were new guidelines introduced which went live in April of this year, so I suspect that the local authority / care team is reviewing all their patients .

It is possible to apply to the court of protection where someone doesn't live in a care haome but I think they don't technically fall under the sme guidelines in that case. 

PALS for your area (https://www.elft.nhs.uk/contact-us/pals-here-help) might be able to help in supporting her to better understand what is being proposed and why (and why now) 

Bill568

Thanks TPagpuss. I have done some reading.

There is a legal “acid test” as to whether someone is deprived of their Liberty. An individual is deprived of their liberty for the purposes of Article 5 of the European Convention on Human Rights if they:

- Lack the capacity to consent to their care/ treatment arrangements

- Are under continuous supervision and control

- Are not free to leave.

D’s daughter fulfils all 3 of these requirements.

If a person is in a hospital, a care or a nursing home, the Deprivation of Liberty Safeguards (DoLS) apply. These safeguards are contained in the Mental Capacity Act 2005 and involve the undertaking of several assessments and the appointment of a Relevant Persons Representative, usually a family member. DoLS is the usual route for a person fulfilling the “acid test” as such a person is usually in a hospital, a care or a nursing home.

If person is being cared for is in any other residential setting, the relevant public body must make an application to the Court of Protection. In this case the care is imputable to the state. Meaning that the care is arranged, funded or provided by a public body such as a local authority or the NHS. This unilateral direct application to the Court of Protection, with no safeguards, is unusual and it seems, controversial and often advised against. Nevertheless, it is the only course of action where a person’s care is funded by the state, they fulfil the “acid test” and they live at home.

I think the answer is talk through the above with D and help draft an e-mail asking for a copy of all the forms submitted to the Court.

elsien

A deprivation of Liberty order is not a bad thing, it’s a recognition that there are some necessary restrictions on the person because they lack capacity around their care and support needs, and that the care being offered is being done in the least restrictive way. It’s an independent check that the care being given which is imputable to the state (because of the paid care) is proportionate and regularly reviewed to ensure it still meets the persons needs. It has to go to the CoP because the standard authorisations only apply in care homes or hospitals. It’s not as widely known about because it’s time consuming, costly, and most local authorities and CCGs haven’t applied for a lot of people at home and in supported living where they really should have done. 

It won’t be done behind the mother’s back. Part of the process is to involve 
the family in the care planning (which is what the calls will have been about) and those views will be part of the application process. If there are no disagreements then the process can be streamlined but even where families can’t look after the person because of safeguarding concerns, their views are still part of the process.
If D doesn’t understand she needs to go back to the professionals to ask them to explain it properly. 

Usually (but not always) someone with a community Dols has the equivalent of a paid RPR, called a 1.2 / rule 3a Rep. Their job is to go back to court if the person isn’t happy or they have concerns about the care plan/restrictions which can’t be resolved via reviews etc. That would normally be a family member, if they wish to take on the role and are appropriate to do so, but could also be a paid rep. 

For information, there should be a new system coming in called the Liberty Protection Safeguards which applies in all settings but that has been delayed till next year at least. 

Flugelhorn

I agree with @elsien I have looked after lots of patients who had DoLS, it was a an important thing - for example it required justifying why the door of a care home was kept locked to stop people wondering out of the building, but gave them as much freedom as possible within the building. At one point if someone with DoLs died then it was an automatic referral to the coroner regardless of the cause and those caring for the person all had to write statements / reports regarding care etc. 

elsien

This is a simplified version. 

https://www.adass.org.uk/media/5895/quick-guide-to-deprivation-of-liberty-orders.pdf


You may also want to note that the CoP has a huge backlog and straightforwards cases with no dispute have been waiting for anything up to a year.

I’m actually quite impressed that the CCG is considering this because in my area they have been trying very hard to ignore that it is a legal requirement  in the hope that the LPS would come into play sooner.  And to answer your other question, it’s nothing to do with funding. It’s recognising that someone is being deprived of their liberty and ensuring that this is being done lawfully. 

So you know what it includes, the main form is the CoPDol11,

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/689223/copdol11-eng.pdf

along with any supporting evidence such as the care plans, latest review etc. 

Bill568

Thank you elsien. Very helpful.

The Clinical Commissioning Board (CCG) has been disbanded effective 1st July 2022 and replaced by the NHS North East London Integrated Care Board (ICB). It may be this transition that has resulted in the need to ensure that there is a DoL Order in place. As you suggest a DoL should have been in place historically but CCG’s have not had this as a priority.

Listening to D it seems to me that the letter writer is in fact a “paralegal” with responsibility to complete and lodge the forms. D’s anxiety is that the person knew absolutely nothing about her daughter. The person had no knowledge of her medical conditions, no knowledge of her care plan or care providers and no knowledge of her daughter’s capabilities. The conversations were always one sided seeking information on behalf of the body that should already know all the answers. With hindsight is seems most of the questions were about whether the “acid test” is fulfilled.

Such an approach would not have happened in a DoLS setting. However, this is not a DoLS setting as the cared for person lives at home. The professionals are there in the safeguarding system. Here there are no safeguards just a “paralegal” who needs to complete a form. Probably for all the right reasons.

elsien

No, they should be visiting D's daughter to complete a time and decision specific capacity assessment, and they should be including all the information from the last review. And it should not be just a form filling tick box exercise. It may be that the calls were also to ascertain D's views on her daughter's behalf to include those in the paperwork but that D didn't  fully take that on board.
I wonder if they were speaking to D with regards to the Annexe C section of the form - regardless of the level of disability there really should be some proper attempts made to get the daughters views on her care, even if it’s via her body language and how she interacts with her family and carers. 

D. would be well within her rights to contact the CCG/ICB perhaps the person who carried out the last review?- to query why the form filler has no knowledge of her daughter or the care plans, and how the application can be carried out in a more person-centred way. 

Bill568

Elsien. For sure D has not understood the context of all the questions she was asked. Her concern, partly driven by my own concern, is that there has not been good communication. D’s worry is that a DoL might be a prelude to making changes to her daughter’s care. With your help and my wider reading, I think that there is no need for her to worry.

The letter starts “In the last ten months a CHC review for xxxxxxx took place”. D has no knowledge of this review. It probably involved appropriate professionals, meetings and assessments at her day centre and with the care agency. Certainly, a DoL would be appropriate to provide necessary care for D’s daughter.

Thank you again for your and others input. I feel much more equipped to help ease D’s anxiety.

elsien

She should have been involved in the review. Her daughter has the right to representation in reviews by someone who is not a professional paid to care for her. And she should have had a copy of the decision letter which would be about eligibility for continued health funding.  So she could also make a complaint about lack of independent representation for her daughter, if she was so inclined. A lot of reviews have been done virtually but good practice would have the CCG sending a form out to her if she wasn’t able to attend.