Sunday, 15 April 2007

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.

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Blogger The Goldfish said...

I'm really sorry you got hurt, Sally. Fear of falling is a horrible thing to live with in any case, but I am glad it has made you angry. I feel so lucky that I haven't needed to deal with those people (well, I'm not sure if it is the people or the systems at fault).

In the meantime have you thought about getting one of those alarmy-doo-dahs in case you fall and need help somewhere you can't reach a phone?

And it may seem like a rather morbid thought and may be a daft suggestion, but if you are badly bruised, how about taking some photos to nauseate the appropriate authorities into giving you help?

Or even go to the press in your bruised state and explain that this is because of the failures of the local authorities? They love that stuff, only downside is you'd be guaranteed to be portrayed as poor helpless cripple...

Monday, 16 April 2007 at 17:22:00 BST  
Blogger BloggingMone said...

This is simply appalling. And if, as you siad, you do not mind sympathy; you have got mine - all of it! It can't be that difficult to get a person an indoor wheelchair if that's what is needed. I am by no means saying that our health system is leaving nothing to be desired, but at least I have never heard that disabled people have to fight for a wheelchair the way you have been doing it for a stunning four years. the usual procedure is that a doctor prescribes a wheelchair, the same way he would prescribe drugs. Depending on your personal health assurance you will mot always be given a state of the art fabulous wheelchair in your most favourite colour, but at least you are given one and then it is up to you to pay for an upgrade if yoou want something more fashionable.
Keep going and I will keep my fingers crossed. It just makes me angry that I cannot do anything else, but leaving a hopefully encouraging comment!

Tuesday, 17 April 2007 at 09:24:00 BST  
Blogger Sally's Life said...

Thank you Blogging Mone- it is truly appreciated.
The system here is that the National Health Service assess eligibility for wheelchairs, but only provide in my case 20% of the cost (of about £4,000), so I have to raise the rest with charity applications. But I cannot take delivery of a wheelchair, or get a wheelchair into the house (steps and narrow doors) until the adaptations are built. The adaptations are a local government responsibility - district councill environmental health (no problem there) and county council social services - who are the source of all the problems.
Its providing the adaptations to make the space for the indoor wheelchair, together with accessible shower, downstairs loo and all the rest of the usual adaptations, that is delaying everything.
Although I know in my head that I am right and they are wrong to delay, in my heart I need to hear it from others - thank you !

Tuesday, 17 April 2007 at 11:37:00 BST  
Blogger Sally's Life said...

Thanks Goldfish, I do get scared by falling. Same goes as to BM, it does help to hear from others who care.
I was told by Social Services eight years ago I would have to have an alarm hung round my neck, but I pointed out that all an alarm does, for the expensive monthly fee, is alert someone that I have fallen. It does not prevent the fall. As I have no family to come to my aid would they provide funding for a carer to be on call? Er, no, sorry. Alarms only work when someone lives in warden assisted accommodation. We agreed that the answer is to make me safe, not fetch help after I have fallen. They know this.
It is the fault of both the system and the people who work in the system. And county councillors decisiion to cut social services budget when the government caps their spending, rather than vote loosing cuts to leisure services (swimming pools, sports) or education. Its ok to cut social services budgets.
Your suggestion of photos; what I do, do, is get my GP to record all instances of falls etc.
No, not go to the press. I would have no control over what was said about me, and following the stalker some time ago, the police advised me to keep a low profile - yes, because I am a single female and live alone ! (We won't go into that particular form of discrimination !)
What I can do is ask someone with clout to sort it - so still considering the LGO.
What continues to bother me is why many disabled do get the facilities they need without quite the same degree of angst that I have had - I think it is just that both my disabilities, and my home (two story cottage on a slope), are complex. And, of course, I know my rights, so I have refused to consider moving house. I love it here. I cannot afford a bungalow that would be as quiet and safe. So I am sticking it out.
I am sure that if ever you did request facilities from Social Services, it would not necessarily be as AWEFULL as this !

Tuesday, 17 April 2007 at 11:52:00 BST  
Blogger seahorse said...

There is a lot of energy coming across in your post and comments, and that is a positive thing despite such a bad state of affairs. It is the energy of anger being channelled, the mind being focused because of the shortcomings of others who are supposed to provide you with what you need and are entitled to. I am hugely in admiration. I fire off the occasional email to my local wheelchair service, then go quiet for another few months because it all seems so pointless. I know so far that I have to wait 18 months for an assessment for a wheelchair, because they have a waiting list of 700 people and no eligibility criteria for people with my condition to 'fast track' me for a voucher. But you don't need to hear all about that. Your spirit has inspired me. I hope some rest helps you recover. Wishing you some peace and calm.

Tuesday, 17 April 2007 at 17:08:00 BST  
Blogger Sally's Life said...

Thank you Seahorse.
We do need to "hear all about that" - I am appalled that you have not even had an assessment.
That is one of the joys of blogging, mutual support and information sharing.
I don't know you circumstances, but if you know what wheelchair/scooter you want, and your condition does not require specialist seating or complex support specificiaton, and you get DLA higher rate mobility component (you should, you should) then if its not used for a Motability vehicle, you can use it to get a wheelchair or scooter through Motability ... and the dealers have to work to Motability's high standards. Is that relevant to you ? Waiting 18 months is just not on .... there is life to be lived !!

Tuesday, 17 April 2007 at 17:26:00 BST  
Blogger Charlesdawson said...

Age Concern Alarm System

Try this link Sally. Get mad - but get action as well! Hope you are feeling better now and no serious repercussions from missed medicaments.

Tuesday, 17 April 2007 at 18:38:00 BST  
Blogger Sally's Life said...

Thanks for the link Charles, I will look into it further, but as I replied to Goldfish; an alarm round one's neck (so not cool) does not prevent a fall, and there still needs to be someone available to come and help, in this case referred to as a keyholder. At least with Age Concern it is run by volunteers, not profiteers.
I could add the risk of falling to the list of reasons why I need a companion helper dog (another reason - I can't cope with fire alarms, whether flashing, buzzing or vibrating). I could lean on it (it would need to be a very big dog) to lever myself up, while it licked my face. Or a parrot could squawk an alarm ... Sally needs help Sally's up arsed Sally needs help. (Sorry, but I am a bit pissed off today).
How do you manage this particular risk ? You have described falling, outside and in, so who would you call, (because I would be embarrassed to call a neighbour) and would you have an alarm round you neck ? I cannot re-word this to sound less hectoring, but I am interested in how others who live alone deal with this aspect of disability.

Tuesday, 17 April 2007 at 20:04:00 BST  
Blogger seahorse said...

I think maybe explaining what's happened to someone you know and trust, whether it's an immediate neighbour or someone very nearby could help. I am now alone for three days a week, and am planning to give spare keys to friends or neighbours (forgetful, have locked self in porch already, necessitating smashing of glass panel) and ask for a phone number for the lady next door in case of emergency. I black out during menstruation and my legs fail me regularly. Choosing a neighbour or friend for emergencies only seems ok. I'd do it for them. Yes you have to be careful who you approach, but if there's someone you know, I really would. My grandma has Charles's Age Concern system and it is excellent. They are prompt in calling fact anything to do with Age Concern gets my thumbs up. I've dealt with them a lot for my Gran, and they've helped me too with contacts for reliable plumbers etc. I'm 34 and didn't hide the fact. They were happy to help. Thanks for your support. It's got me thinking. It really isn't on is it? Anger can be such a useful force, but do rest extra as venting even necessary anger wears you out, I find. Now where's that number for social services. I've been on another waiting list for needs assessment for 14 months now...Sally you are not alone in the ineptitude of it all. Take care ((((()))))

Tuesday, 17 April 2007 at 22:43:00 BST  
Blogger Sally's Life said...

Of course, I do realise that its not only singles that face this dilema - partners are not around all the time - they go to the pub !

Tuesday, 17 April 2007 at 23:03:00 BST  
Blogger Sally's Life said...

Bless you and thank you Seahorse - you too get on that phone.

But neighbours ... no ... they are either retired or working, (and then there is the one who threatened me, and the other one who gave bad financial advice and had to repay me thousands) or single men and scared to death (two of them!) that I may expect ...

Friends ...yes in a crisis or emergency, but none of them are close by.

I don't want to fall. I want to be safe. All the falls during the last year would not have happened if I had the use of a wheelchair.

Of course, the real reason, is I don't want an alarm to detract from my cleavage !

Tuesday, 17 April 2007 at 23:20:00 BST  
Blogger Charlesdawson said...

I don't have an alarm call, I have my mobile phone. If worst came to worst one can dial 999, but it hasn't come to that yet.

The main risk is outside and in winter. In the house I have everything arranged so I have plenty to grab.

This is part of what I want to blog about for BADD so excuse the briefness.

Wednesday, 18 April 2007 at 18:31:00 BST  
Blogger Sally's Life said...

Thanks Charles. Do you infer that you carry your mobile around with you ... Rather than find it has been left in the room you didn't fall in. I would not like to risk falling onto the phone ! Isn't life complicated.
I look forward to BADD.

Wednesday, 18 April 2007 at 19:53:00 BST  
Blogger Sally's Life said...

I have made the initial contact with the Local Government Ombudsman and begun to compile my complaint. They have helpfully sent me the forms by email so I can do it at my pace, rather than online live, so to speak. I don't have to do all the re-telling; just the outline of what I think they have mismanaged and they will (hopefully) then take away my files (9 folders) and investigate. The LGO do not investigate local authority's decisions - but the processes that LAs use to arrive at decisions.
And how long that took - and whether the process accorded legislation and government guidance. Its going to be a long one. Thanks for everyone's support.

Thursday, 19 April 2007 at 09:24:00 BST  
Blogger seahorse said...

Sorry Charles, I should have put your suggested alarm system, which is what I meant.

Sally - I really hope that even though it may take a long time that getting the LGO on board makes you feel like a positive outcome is at least increasingly likley.

Thursday, 19 April 2007 at 10:57:00 BST  
Blogger Charlesdawson said...

The Royal British Legion also do an alarm-call system but I don't know anything about it, I'm afraid, or whether it is limited to ex-Service personnel. Their address is and then click on New Poppy Support Services on the left-hand side.

Monday, 23 April 2007 at 17:41:00 BST  
Blogger Sally's Life said...

The RBL are rolling in it - my mother as a widow of a deceased service personnel, is eligible for equipment etc., but my generation is not without being direct service. Anyway, that was my understanding, but I will click on it and check, again, just in case. Thanks CD

Monday, 23 April 2007 at 20:37:00 BST  
Blogger Sally's Life said...

Thanks Sea Horse, I am still (still !) working on the LGO complaint.

Monday, 23 April 2007 at 22:12:00 BST  
Blogger Sally's Life said...

And I have emailed RBL, thanks Charles.

Monday, 23 April 2007 at 22:16:00 BST  

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