• Facebook Social Icon
  • Twitter Social Icon

© 2016 created by SFNPR.com in the sole copyright of Gtr Mcr Neuro Alliance

Anon

About a year ago I gave up, I couldn't take anymore. I'd had 5 years of struggling with my partner and I started to realise that I was the problem. I was fighting so hard to get her what everyone said she needed that I hadn't realised I was just walking into a trap.

Every time I said no or hang on when the council tried to put any old thing in place I was just giving them all ammunition. When I stood up for my partner and challenged their decisions they documented me as being 'difficult' and in an MDT I was accused of "deliberately blocking attempts to put a care package in place".

None of it is true.

My partner ended up in hospital for 8 weeks because of the incompetence of an OT and a Physio neither of whom knew anything about neuro. She sat in a bed for a further 2 weeks because panel refused to allow her home to have intravenous antibiotics. 

I found her on the floor more than once when care workers left her alone because they didn't have time to give us the full hour. When I complained the care company made a complaint about me and social services and the CCG sided with them. They lost records and paperwork and falsified documents. They changed CHC checklists and DSTs. They didn't give panel all the medical information supporting our case. Her nursing assessment and care assessments were factually incorrect. They refused to put them right.

There was a campaign to blacken my name and persuade people that I had an agenda and was a risk to my partner.

A CCG manager and a senior social worker called at our home and suggested that I was neglecting my partner. They asked why I wasn't "willing to give natural support" and threatened me with the Court of Protection and prosecution for neglect.

I went down the public law route with a well known firm of solicitors who once they'd earned their fee dropped the case. I went to the Parliamentary Health Ombudsman who told me my complaint was so complex that it would take a long time to sort out. It's been 4 years and we're still no closer.

I've had therapists lie about what they've done in their sessions. I've seen reports that accuse my partner of "lacking motivation" and "being uncooperative". I wish that she had that much ability to be either.

I've been trolled on social media and had threatening letters from the CCG and social services warning me that I'm 'vexatious' and have harassed staff.

If I never had to talk to any of them again it would be too soon but what they don't seem to get is that if they didn't keep cocking it up I wouldn't have to contact them at all.

Then one evening I sat with our dog and listened to my partner breathing like a runaway train. She hadn't been able to eat solid food for months and choked when she ate. She was so ill that every morning I went in to give her her tablets I thought this is going to be the day.

I realised then that she'd never get the right help unless I gave her up.

I cried all night. But the next day I rang a solicitor and asked how to start the process of effectively putting her into care.

I notified the council that I could no longer cope and all of a sudden I had Directors of Service on the phone asking me what they could do and for the first time in months the CCG case manager asked if she could come and see me.

But I knew it was a ploy to stop my partner costing them more.

I gave her up and the day I left her in a home with lots of old people was the day I fell apart.

I'd had all the years of watching her deteriorate, I'd lost my beautiful girl who loved dancing and yoga and could drink me under the table. We didn't go on any more holidays. I hadn't even been able to talk to her for so long I'd forgotten what her voice sounded like. But I'd done the right thing.

Within a few weeks of going into a home my partner was assessed as requiring acute care. Her hard muscles; the ones that hold you together inside, were so weak that her central core was on the point of collapse. She had lost the ability to swallow without choking and due to a lack of appropriate therapy had lost the ability to speak. She could not understand what she was being asked or process anything she was asked to do. She had Endocrine problems and was having night seizures. All of which I'd suspected and her doctors had reported. All of which had been ignored.

She's in a different home now as I sold our house and she's cared for privately. She has an advocate and a Deputy in the Court of Protection. Two members of the CCG and social services are being investigated for their failings and I've had apologies and promises that lessons have been learned.

They haven't and they won't be. 

The priority is money not people and my partner is evidence of that.

She could live for 20 years with the early onset Dementia that she's recently been diagnosed with and I've decided that once she no longer recognises me I will go abroad and start again.

I will never forgive the truly despicable way in which we both have been treated but I know we're not the first and we certainly won't be the last.

For M x