Restrictions of parents caring for pmld daughter

my daughter receives CCG funding. i realise we are lucky to receive this. she is 54 and living in supported living flat, and is very happy there with a good team of cares who she loves.
however, the care company who are responsible for her care say we cannot take her out, or have her home with us for a visit, without giving about 3 days notice. this means we cannot do anything spontainiesly e.g. a day out to the coast, or a visit to one of her brothers who both live a fair distance away.
does anybody know if this is a definate restriction on what we can do with her as her parents.
we cared for her until she was 42, so surely we can be trusted.s

Hi Pamela,
Has this always been the case or only since Covid?


i have asked for a meeting with care company to clarify this Melly. take care.

That applies to absolutely everyone at the moment - essential journeys only.

yes i do realise that covid situation at the moment, would prevent her being taken out by anyone.but this happened before covid pandemic.

i just want to get my facts straight before i have a meeting with them.

thank you.

I think you would have to read the contract to be certain, of course if you rock the boat too much you may have to find a different agency, they will always have you over that barrel.

Let’s look at it from the agency point of view - they have a team of carers for your daughter - you come along at 9:00 a.m. and take her out for the day - what do the carers do now?

to be honest we have never had a contract.

yes i can see your point, but there is always the housework that has to be done.

and surely this has to looked at from our point of view too, and our daughters point of view. surely its beneficial to her mental health to spend time alone with her family.

If you daughter has PMLD, then I presume that your daughter is funded by Continuing Healthcare?
On a 24/7 basis?
In that case, the carers can either come with you or take time off.
It’s really not up to them to dictate to you when she can and cannot go out, unless there has been a formal DOLS (Deprivation of Liberty) meeting etc.??

Have a look at the Continuing Healthcare Framework, especially in relation to the Human Rights Act and the Right to a Normal Family Life. I’m sure it’s covered somewhere in there, because that was the reason I turned down a care home offered to my mum 40 miles away!

Article 8 of the Human Rights Act, 2014.

Article 8 protects your right to respect for your private and family life

What is meant by family life?
You have the right to enjoy family relationships without interference from government. This includes the right to live with your family and, where this is not possible, the right to regular contact.


thank you all for your helpful replies.

It seems the care company also thought i was referring to taking our daughter out against covid rules.

that was not the situation at all.
it taught me how clear i should make things. and how easily what i say can be misunderstood.


Glad you have cleared that up then.


I think the CCCG should clarify exactly what they have asked the care company to provide, because the care company are paid by the CCCG. I imagine on a 24/7 basis. So if you take your daughter out, that shouldn’t affect what the CCCG pay them?