The Things That I Can Think of That I Know

That the Local Government Ombudsman brokered a Local Settlement ... which Dorset County Council have yet to fulfil.

That it was agreed that I should have a Facilitator/Advocate to assist me to achieve disabled facilities and adaptations. Sorted. Beginning to work well.

That the Police Community Support Team are effective and do support single disabled females who are threatened (allegedly) by their neighbours (because I achieved a Tree Protection Order on their tree in their field) and who are frightened by their neighbours (allegedly) taunting them (me) with an air rifle, pointed at me sat in my wheelchair in my garden. In this idylic (allegedly)quiet little Dorset village.

That a couple of police in full body armour and armed with handcuffs and truncheons, knocking on the neighbour's door unannounced, and telling them in no uncertain terms, that threats and intimidation to anyone, including single disabled females, is likely to lead to police action -is effective. No matter their protests that they did not do anything.

That I then thought "to hell with this, I don't have to put up with it" ... and put my house up for sale.

That I then secretly thought: Thanks to those neighbours from hell, I have police evidence and social services support for a necessary house move. Secret no more now is it !

That I could not afford from my sale to buy a bungalow more suited to disabled facilities and adaptations, in a safe quiet community, closer to friends and family.

That the Housing Corporation extended the scheme for Open Market Homebuy shared ownership to physically disabled people through specialist housing assocations, and that those of us too ill to work and dependent on means tested benefits, get the rent and service charge to the housing association, paid through benefit entitlement.

That that is how it ought to be in a civilised society.

That social services staff have a job to do in assessing the needs of peoples' disabilities, and they fill their days doing that. And their weeks. And their months. And their years. That is what they are employed to do. That it takes weeks, months, years, to achieve assessments, and to achieve the disabled facilities and adaptations the service user is needing, does not seem to be relevant to their career.

That I have been waiting since 26 September 2008 for my (new, senior, Team Leading) Occupational Therapist to discuss with me the draft assessment she produced and I sent back with necessary amendments.

That I have sold my home of eighteen years, subject to contract. That I don't mind now, really.

That I have bought the bungalow of my dreams, subject to contract. (oh god, the wall paper; oh god, the carpets; oh god, the kitchen, oh for fx sake a lavender bathroom, oh nevermind...)

That the District Council Environmental Services department are very good at their jobs, and have (there goes my Lupus brain again, loosing words, cogdysfunk'd again).... referenced ? No., sentenced ? No., ..... sent....referred... Yes that's it .... Referred me to the project managers, who will carry out the technical survey of my dream bungalow, next week, towards work on disabled facilities and adaptations. Yes, next week. Because they are more efficient than social services.

That I can bypass (allegedly) the County Hall Major Adaptations Panel (who ((allegedly)) messed it all up in the first place which resulted in my decision to request the Local Government Ombudsman investigate the delays) (too many paranthesis/ees)...) because under the rules for shared ownership housing I can have a specialist mortgage (interest paid through Income Support) to pay for the stuff necessary to my disabilities that the District Council's Disabled Facilities Grant (up to £25,000) cannot fund, so stuff the Major Adaptations Panel and their illegal (allegedly) decision not to fund necessary adaptations.

That under new DFG (keep up) legislation, wheelchair access now has to be provided not just indoors (and into the indoors) but in the garden as well.... and not just wheelchair access to the garden, but to the appurtenances of the garden.

That an appurtenance is not just the rotary laundry dryer, or the shed, or the wastebins or water butt ... but also an appurtenance is the enjoyment of the garden, access to the apple tree ... the veg plot .... yeah, right, I will believe that when it happens.

That this fabulous user-friendly, diversity-supporting, housing association, let their shared ownership tenants keep a pet, or a live-in lover ! Sorry ... that tenants can choose who they live with ... a dog, a chicken or a sex-slave. Soorry, this is getting worse !!!. Get a grip.

That life does get better. Slowly.

That my Bump (keep up - she's now 30!) is happy.

That it is ten years since my health, and my life, began to get worse.

That it is eight years since I first asked social services for wheelchair access into my home.

That it might just happen.

Allegedly.

That I miss blogging, but can't do it as I once did.

Until I get disabled facilities and adaptations.

Another Light Bulb Moment

Update 4 January 2008:
More problems with CFLs - energy saving compact fluorescent lights - are being reported.
See today's BBC news by clicking this LINK for more up to date information
and for information on 'Spectrum' the UK Alliance for (people with) Light Sensitivity, click on this LINK.

The following was originally posted in March 2007.






This is for the attention of people with light sensitive medical conditions, Lupus, M.E., migraine with or without auras, people who are old, people who don't feel well and don't know why.

Enter the CFL:

CFLs, low energy light bulbs, are a DANGER to the HEALTH of people with light sensitive medical conditions. Particularly LUPUS !

I hated these low energy light bulbs before I knew this. I hated them because they give off a horrible yellow glow, casting all into a gloom that is just enough to see with but never enough to be in. All sorts of organisations keep finding an excuse to send me free ones, to encourage me to be green.

These bulbs are marketed as saving £10 a year in energy. They last three times longer but cost three times as much to buy. I am insulated and efficient in all areas but light bulbs and I recycle everything that I can. I don't need to save light bulb energy, I need to be able to see what I am doing without risking a Lupus flare or Lupus face disfigurement. 'Lupus' is latin for wolf, and the Lupus disfigurement was described originally by the medics as in the shape of a wolf's mask.

http://www.nucleusinc.com/

I prefer the description 'butterfly' rash now used by Lupus UK. The malar rash is rare nowadays thanks to modern drug treatments. I don't have this aspect of Lupus, and that's the way I hope to remain.


In Lupus, and other light sensitive conditions, old fashioned incandescent light bulbs are safe. CFLs and Fluorescent light bulbs emit UV light, which is not safe for people with these medical conditions. (By the way, neither are infra red heaters which don't warm the space but heat a surface when the infra red rays hit the skin - making you feel warmer. In the depths of winter at Pantomime season, I have a burnt face if I forget to apply sunscreen before going to the village hall event, which has ceiling mounted infrared heaters.)

When the recent push to replace ALL, YES ALL, incandescent light bulbs with CFLs was announced by the government department that needed a sexy scheme to rescue them from the doldrums, I felt, again, part of the ignored minority. My friend whose severe migraines are triggered by CFLs (amongst other triggers) rang in a bit of a panic. Don't worry I said, the Lupus organisation will be onto it. Here they are: this from the latest Lupus UK newsletter, quoted in full:

SPECTRUM Campgain on Light Bulbs:
Four charities working for people with light sensitivity conditions have formed the umbrella group SPECTRUM to co-ordinate approaches to Government on low energy light bulbs. SPECTRUM brings together LUPUS UK, the XP Support Group, Electrosensitivity UK and the Skin Care Campaign. Many health conditions, including Systemic Lupus Erythematosus, can result in severe reactions to low energy bulbs (CFLs) because these bulbs are fluorescent rather than incandescent. SPECTRUM has written to David Miliband, Secretary of State for the Environment, to express deep concern about potential moves by the Government and European Union to force universal use of CFLs. (These were trailed in the Government's Energy Review published in July 2006.) DEFRA (Dept for the Environment Food and Rural Affairs) have responded to SPECTRUM's joint letter and we (we/the representatives) are due to have a telephone conference with DEFRA officials shortly. If you are concerned about this important issues, you may wish to write to your MP, MEP or to David Miliband. PLEASE NOTE : DEFRA have enquired what numbers are involved in the groups represented by SPECTRUM.

We will be writing to DEFRA

and our MP and add our names to the list of people whose lives will be severly affected, medically and socially, if CFLs are pushed harder and incandescent light bulbs consigned to history.

If you are affected, please contact the Lupus organisation above or your Member of Parliament, so that DEFRA can be given accurate statistics of people affected by CFLs, who cannot be ignored in the rush to be seen to be protecting the planet.

EDIT: Sign the Petition direct.

Update 4 January 2008 - The Petition to Parliament has now closed. If you are affected, please use the link above to contact your Member of Parliament and ask for her/his support for the campaign against CFLs. Thank you for your interest.

WORLD LUPUS DAY - 10 MAY

http://www.lupusuk.com/

S L E

Systemic Lupus Erythematosus

Lupus - probably the classic multi-system illness

90% of Lupus patients are female

No two Lupus patients are alike

Fatigue and joint/muscle pain are common

Patients may have few or many symptoms

Lupus is neither infectious nor contagious

Major organ damage (heart lung kidney liver brain) is quite possible

Lupus remains incurable

Early diagnosis can make a difference

(Source: Lupus - A GP Guide to Diagnosis

published by Lupus UK)

~~~~~~~

Light Sensitivity

Exposure to sunlight can result in a disease flare

Fluorescent lights are also a danger to Lupus patients

Energy saving lightbulbs - known as CFLs

(compact fluorescent lights)

can also result in disease flare.

More information from my earlier POST on this subject.

" ... someone you know may have Lupus ..."

Please sign the PETITON to the UK Parliament

by clicking on this word - PETITION

to ensure that Incandescent lightbulbs are not banned

in favour of low energy CFLs