All is Not sweetness and light

My blog over recent posts has not reflected the whole of my life; why should it. No-one needs to know all the problems, and I need an outlet for the Sweetness and Light that is around my life. However, I now need t0 redress the balance; not for sympathy (although that is welcome!) but for the record.

I have had two falls in two days. The first wasn't too bad, in its effect on me although I was afraid for the laptop, but it should not have happened. Yesterday's fall was spectacular and frightened me. More than the bad fall last November, a few days before surgery, which caused me to hobble for two weeks. I fall because of my complex physical, cognitive and sensory disabilities. I fall because of physical fatigue and dizzyness. I fall because I do not have the use of an indoor wheelchair.

Today all my joints are jarred and I hurt in places that are not even bruised. I was on the floor for a longish time before I could crawl to a chair. I was in the chair a long time before I could move and sort myself out. The fear I felt was more than the pain. Once the shock had subsidised I felt angry. And anger is such a good thing when it is translated into action.

I have fallen because my request to social services for wheelchair access in the home made in April 2003 (yes, not a typographical error, it was 4 years ago) has not yet been met. This delay, as regular readers may recall, is despite involving my MP, despite the NHS wheelchair service assessing an indoor wheelchair as necessary over two years ago, despite agreeing an assessment of my eligible need with the County Council for loan funding, and the District Council for Disabled Facilities Grant. Despite the Fair Access to Care criteria imposed on local authorities with social care responsibilities by the government. Despite the government guidance to local authorities on Housing Adaptations for Disabled People.

Last November, a short while before the skull surgery, I had an enormous meeting in my home with three people from social services (my OT, my social worker, and a new bod, their boss), one (lovely supportive knowledgeable) man from the district council who decides disabled facilities funding, and two from the organisation that is now contracted to manage the schemes because social services are no longer capable.

Three months prior to that meeting I stated that everything had to be finalised and handed over to the organising organisation (!) before surgery, as I could not guarantee being able to deal with it afterwards. Such has proved the case. Cognitively I have been incapable of dealing with the complex situation. Shortly after the surgery I received a letter from the new bod at Social Services that was so full of such ginormous errors and misunderstandings that I could only weep with frustration. A month later I wrote and told the new bod he was wrong and causing me stress and acute anxiety. He replied he was right. I did not reply. Silence.

Until I fell yesterday. For months I have been afraid of contacting social services, or anyone else. But now the fear of falling has overtaken that fear. Today I have not taken the weekly low dose chemotherapy that controls Lupus, because it also renders me brain-incapable. Instead I have written (and posted) a 20 page letter to the new bod at Social Services explaining all that he should have read from the file of previous assessments and agreements, and copied it to everyone else and asked them to act. I have documented the falls and blamed social services and stated I can no longer deal with the stress and acute anxiety that the process of achieving disabled facilities is causing me. I have stated I cannot keep doing their job for them. I cannot keep on keeping on.

Next week I will consider contacting the Local Government Ombudsman, which I have been too afraid of doing so far. Now I am more afraid of falling. Again.

Normal service of blogging will be resumed as soon as possible.