Anyone given up on the NHS and used private care?

Discussion in 'I care for a person with dementia' started by Boldredrosie, Feb 8, 2016.

  1. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    244
    After a series of very unpleasant and unsatisfactory interactions with the memory clinic, I've come to the conclusion that as a service to support my mum it is now irrelevant, as is social services. Neither organisation listens to anything I say about how mum is. I've had two independent agencies conduct a needs assessment and a capacity assessment and both those agencies found my mum without capacity to make decisions about her care and also that she needs more care than she is currently receiving.

    I don't seem to be able to get either the memory clinic or social services to accept this and neither of them hear me when I say: "I cannot and will not look after her."

    As she's self-funding anyway, I was wondering whether to just have her dementia care moved to the private sector? I'd be interested in other people's experiences.
     
  2. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Hi.
    I may be not fully understanding your post as it's quite brief, but I think you are talking about several things here. Despite everyone's hopes of an integrated health and care system everything in the UK is still very divided, and unconnected. Communication between agencies is often poor as well. I'll divide it all up so I make sense (to me as much as anyone else!)

    The NHS should be able to diagnosis and treat illness, and social care be able to assess (and provide, sometimes) care and social support.

    As it is the NHS sometimes manages to diagnose and treat. With dementia I'd say that what you want from the NHS is treatment if that is likely to work and the diagnosis in order to do things like claim Attendance Allowance or cancel a driving licence. There is no point expecting more than this as dementia is then a chronic condition that affects everyday life. Obviously other health conditions need treating and if there is further treatment that supports a person with dementia that's great.

    I'd also say that many people with dementia never have diagnosis or treatment from the NHS so for some it doesn't provide any sort of service for this illness. Neither does any sort of private health care.

    If a person has lost capacity in some areas then a Power of Attorney can be used with no authorisation from a doctor.

    Knowing yourself that a person has dementia and is struggling with everyday life then brings us to social care. Now many people are self funding, once again social care may have no contact with people with dementia and their loved ones. For many people the only thing they will do is assess. They can then arrange care and reclaim the money from those who have some, should people want to take that route.

    All adult social care now is from private or charitable agencies. They have to meet social care criteria and 'standards' to some extent but that's it. They can charge what they like and offer what they like, though if someone has their care through social care agencies this is regulated.

    Only if a person has no relative or friend, and no or very little money, will social care take responsibility for a person's full care arrangements. The NHS don't really have a system for a person who has no friend or relative and lacks the ability to be able to administer their own health care.

    So back to your post:

    Does your mum need anything in the way of dementia treatment (medication basically) from the NHS? If no, then there's no need to have services from them at the moment. It is possible to claim allowances etc with just a confirmation that a person has dementia and I'm assuming that someone has agreed this.

    Does you mum need support and care that she is not currently getting? If yes, and she has some resources, and is able to accept care, then it needs organising. If she won't accept care then it's down to you to try and find a way of making this work for her. That's down to someone but the care will be from family or private agencies anyhow. If organised through social care, they have criteria (how much in need a person is of care and how unsafe they are without it) but at the end of the day if it's paid for by the person it's up to them or their family what they have.

    So, my thoughts are:
    Get any helpful medication
    Get any benefits that your mum is entitled to
    Arrange whatever care your mum needs.

    The problems are that at the end of the day it's down to the family to organise and co-ordinate this and there is no escaping that, unless you effectively 'divorce' yourself from your parent. No service will step in when there is a relative involved. At the same time we have to cope with our loved one being more and more affected by dementia and what that does to us and our emotions. We have to administer everything even if we don't do any 'direct' personal care (but I find that there are always things to do as co-ordination of care always has gaps so I think 'no' personal care is unlikely.) We have to arrange doctors visits, organise the household, check the care records, etc etc etc.

    That is where Talking Point comes in with emotional support, hints and tips, clear advice from those who have gone before, resources. I would say that one of the main issues discussed is how to help someone to cope with receiving care, especially care from outside the family. There's lots of advice of things that have helped.

    Hoping I've understood your issues correctly and that this is of help.
     
  3. bemused1

    bemused1 Registered User

    Mar 4, 2012
    3,403
    As a self funder and a never diagnosed husband, I would say in my experience you will get no help from anyone.
    Social services are under such pressure they will not give any help to self funders , memory clinics I don't know about.
    Its up to families to find the care and monitor. we use a private agency which I found myself and keep in order for my husband. There is no help, I suspect the same would be true if he had been diagnosed.
    AnneED is correct in all she says I've just reduced it to the nitty gritty from the point of a self funder. The decisions are yours and no one else will make them for you
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,006
    Yorkshire
    Hi Boldredrosie
    Seems to me that if you know your mum no longer has capacity, if you know she would be better supported in a care home, if she is self funding - go ahead and do what is best for her
    The care home of your choice will assess her so that they can be sure that they are able to provide for her needs - you have all the documentation you need to show she is no longer able to make this decision for herself - you know that her 'I want to live at home' isn't backed by a real understanding of what this means (if she says this always then ask her what and where home is and who else is there - as suggested by a member here - as this will show anyone else listening how skewed her understanding is)
    So go ahead
    Dad is self funding, he went into his care home when I felt is was necessary, the homes I considered had no problem with that
    You can only give it a go

    Good luck
     

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