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  1. hospital aftercare

    Posted by WARTHOG at Mon Aug 01, 2011 10:40 pm

    Hello,
    I look after hubby 24/7 and have done without any help from anywhere for 4+ years. I am having a total hip replacement in about 5 weeks due to the re-surfaced one failing. Have been to a seminar at the hospital for the operation today and the OT told me if I lived on my own I would get 6 weeks support free.
    BUT
    because it is hubby that will need the care and not me I will have to pay- that's 6 weeks of care twice daily, I cannot afford it.
    If care is not set up for hubby there is a chance they will not do the operation.....
    Is this right?
    I must have saved Local Authority/government thousands over the years.
    Hubby had a stroke in 2007 and was diagnosed with vascular dementia caused by the stroke in february.
    I seemed stuck between a rock and a hard place. I have to sit on the floor the wash hubby now as I cannot bend for long- I need that operation
    Confused and upset and skint

  2. Re: hospital aftercare

    Posted by Mistyange at Mon Aug 01, 2011 10:44 pm

    Hello
    I am so very sorry to read of your plight. I hope someone comes along on the forum to offer you some help with care costs. Its ridiculous that you should have to pay considering your own disability. Life can be so unfair sometimes.
    sending you hugs xx

  3. Re: hospital aftercare

    Posted by Jennifer 1 at Tue Aug 02, 2011 12:20 pm

    Get onto social service,dont give up,screem and cry at them,just keep on and on.
    Sad this has to be done,but it is the only way,never mind the O/T go above her.
    You need a assesment,tell them.Get on the phone today.
    Jenni x

  4. Re: hospital aftercare

    Posted by mama pud at Tue Aug 02, 2011 2:58 pm

    Hi Warthog,

    Wise words from Jennifer1, you do need to push for what you need - would your own doctor back you in this, his/her words will carry weight.

    They should not put you in this position, I imagine the last thing you feel like doing is fighting your corner, but it has to be done, preferably with backing of your doctor.

    Please let us know how you get on xxxx

  5. Re: hospital aftercare

    Posted by Jennifer 1 at Tue Aug 02, 2011 9:23 pm

    Hi Mama,some doctors are pointless love,go for the social services MANAGER.Say how sad you feel about there services,and you feel like giving up.Go for the main vein in the neck.They will soon want you off their backs. Keep on and on and on.
    Jenni

  6. Re: hospital aftercare

    Posted by swissmiss at Tue Aug 02, 2011 9:50 pm

    Hi
    I agree with Jennifer...dont ask, just tell them you are giving up if they dont give you help. We suffered 14 years with no help in Lincolnshire...caring for our two Autistic sons and then my darling husband after he became Paraplegic after trying to take his own life in 2007. He took his life in 2010 because he felt he was an intolerable extra burden for us.We have moved to Southend, into my parents house which was empty. A month ago I rang up SS and told them that unless I get respite I cannot physically cope. Then I had an emergency hospital admission before they got their act together and they let us down...separate thread...but last night I rang the SS emergency duty team number and had a good long chat about how the situation is unmanageable. Today, a new SW [the first one upset my sons badly when I was in hospital so I asked them to change her and now we have a super one...moral of that story is they will give you what you will accept] and the Adult placement respite service lady came, two days earlier than planned. We are to get £250 a week DP which will provide 3 days for my youngest at a day centre and 104 respite nights a year!!! I am pinching myself but cannot quite believe it but how sad I am that we couldnt get any support when my husband was still alive and then he might still be here.
    There seems to be no evenness or fairness or equality in the system. You have to stand your ground, recognise that what you are doing is a huge service for them [although we do it out of love for our loved ones] and tell them what you need to continue.
    I was told today that emergency cover if I had to go to hospital would not come out of the regular DP but would be given swiftly via an emergency panel meeting.
    Good luck
    Karen x

  7. Re: hospital aftercare

    Posted by Jennifer 1 at Tue Aug 02, 2011 9:53 pm

    You got there Karen,well done you.
    Hugs x

  8. Re: hospital aftercare

    Posted by Online support team at Wed Aug 03, 2011 8:09 am

    Swissmiss, that really is fantastic news!
    We're really pleased to see that finally you're going to be getting some support for you and your boys.

    Sam
    Online support team

  9. Re: hospital aftercare

    Posted by kerry. at Wed Aug 03, 2011 11:44 am

    About bloody time Karen. Well done, at last a little light at the end of what's been a very dark tunnel for you all.
    But you're right about inconsistency- I've been told DPs I can have are £25 per 24 hr period end of (it's the foster care rate and that's all they'll offer even though apart from the stupidness of it, there aint any freaking foster carers here anyway and certainly none who would care for the boys when they could care for 'normal' kids for the same money!!!)

    Anyway back to OP; all good advice and I would stress that the OT is putting you in an impossible situation which is extremely dangerous; either they leave you to care when you need care yourself which is unacceptable or you go without your op and cause danger to yourself, either way, they are failing in their duty of care.
    Good luck and keep on at them

  10. Re: hospital aftercare

    Posted by swissmiss at Wed Aug 03, 2011 8:21 pm

    Thanks. In the end it became imperative because I couldnt physically carry on. We are looking at 4 day centres over the next few days with Ali's new SW and they all have places available so hopefully it will not take long.
    I am fuming with the NHS response to his self harming. I paid to see a neurologist because there was a 6 week wait. Now, 3 weeks later, after she said she would do further tests on the NHS we have been told there are no appointments available until mid September at the earliest. She referred to Psychiatry...the response was to send a Community Nurse today who "screens referrals to the consultant" who will discuss Ali with the consultant a week on Friday and then decide what they might or might not do...but he said he had no idea why he might be doing it any more than I have! A referral was made without our request for my eldest who has Aspergers to mental health...fuming again...he doesnt have mental health problems but that is the only service for people with Aspergers...they wait until they have them rather than offer any support he said. I took us both to our GP on Tuesday and insisted on help...got Zopiclone to help him sleep for 3 nights and he said he would ask the Neurologist to offer a cancellation if she has any. Totally inadequate but apparently, according to the nurse today, they are not failing us because they are complying with their 18 week pathway?????? No matter if he is punching himself on the face if we are not watching him all his waking hours and is not sleeping until 4am without Zopiclone and I have been made ill with it and had to be admitted to hospital and should be resting now to get well and his poor brother is having to be the best father in the world to him while grieving for his own father who went under due to their neglect.
    To say I am angry is the understatement of the century. What should I do? I have fought a migraine since he left at 3 and need to complain I think...more stress. %%%% the NHS...."No Hope Services"! :evil::evil::evil:
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