By Wyndham Clampett,
I was diagnosed with Idiopathic Spincoerebellar Ataxia in June 2012, but have unknowingly had the condition since pre-teen years. Ataxia is an incurable progressive condition that initially affects mobility, making walking difficult. I currently need the use of a walking stick, and also use a mobility scooter.
I was diagnosed with Idiopathic Spincoerebellar Ataxia in June 2012, but have unknowingly had the condition since pre-teen years. Ataxia is an incurable progressive condition that initially affects mobility, making walking difficult. I currently need the use of a walking stick, and also use a mobility scooter.
Recently my Ataxia symptoms have extended to
weak ankles which give way without warning accompanied by strong pain. (The
ankles are not actually weak, it’s just the nerves failing). This means that
ankle braces are needed most days.
Unfortunately I also have problems with my
spine (trapped nerves, etc) which means any jarring usually causes severe pain.
Even standing for a while or walking can lead to severe discomfort. And of
course the back pain aggravates the balance issues, and vice versa.
I am a ’new boy’ in the sense that it is only
in the last year that I have started to experience for myself what it is like
to be disabled. I find walking unpleasant and often difficult. I can no longer
use public transport for travel, and with my mobility scooter, find all sorts
of obstacles to access. Generally also, I find very patchy information, even
from organisations who should be leading the way, such as the NHS, and even the
government.
Being single and alone, also makes everything just that little bit more difficult. I think my initial contribution to this group may be to encourage thinking about the needs of the newly disabled. Having to deal with this, with (usually) minimal support, can make matters worse than they need be. I no longer work, but was an experienced Management Consultant, having specialised in Programme and Project Management, with over 24 years in IT and business leadership roles, covering a broad range of sectors from Finance to Manufacturing, and the Public Sector, including both central and local government.
Being single and alone, also makes everything just that little bit more difficult. I think my initial contribution to this group may be to encourage thinking about the needs of the newly disabled. Having to deal with this, with (usually) minimal support, can make matters worse than they need be. I no longer work, but was an experienced Management Consultant, having specialised in Programme and Project Management, with over 24 years in IT and business leadership roles, covering a broad range of sectors from Finance to Manufacturing, and the Public Sector, including both central and local government.
I did not spend my days in high school dreaming of living in
council accommodation, and certainly did not dream of ending my days in council
managed sheltered housing. Unfortunately however, I fell ill and what with one thing and
another, found myself unable to work, and not fully able to look after myself.
Initially, Barnet Council Housing department declared that it was okay for me
to be homeless. They didn't use those words, but that is what they meant.
As anyone who has tried to find rented accommodation in
Barnet can tell you, there is almost nothing available for anyone receiving
housing benefit. Something which is now acknowledged by all, including the
council. For a variety of reasons, landlords have decided they no longer want
to take part in providing social housing in this area and so I was not able to
find cheaper housing. I did try... really.
Consequently, I had to pay the balance of
the rent from my savings as the housing benefit did not cover the full amount
due and the council refused my pleas for help. After a while my savings were
gone, and I had to sell my Premium Bonds, ISA, and even the largest of my
Pension Funds (at a cost of fifty percent of its value). I even started selling
my books, CDs and DVDs, although gave that up when I realised just how little I
was getting for them. Eventually though the council accepted that my medical
condition was severe enough and offered to provide a home for me.
Before I forget, let me make it clear that I am very grateful that
I am being housed at a time when I can't look after myself. I really am
grateful, but I don't believe this should stop me from pointing out some
difficulties I encountered. I won't go into detail about the process of finding
council accommodation through Barnet Homes, beyond saying that I was
quite unprepared to be thrown into this world of social housing, and
the council offered me no support whatsoever.
The nightmarish process should have ended when I finally moved in,
but it took a great deal of persistence and effort over several weeks before I
got all the finances sorted out. It was at this point that I discovered that Barnet Homes is
effectively subsidising the rent by pushing up the cost of the utilities.
In my privately rented two-bedroom flat I had been paying £58 per
month for combined gas and electricity, and £11 per month for water, making it
£69 per month for these utilities. In my new council accommodation, I am
paying £58 to the council for just heating and hot water, and another £40 to a
utility company for electricity. The council also takes about £36 per month for
water (up from £11...), making a total of £134 per month, an increase of £65
per month - which has to come out of my benefits (ie my food budget).
Given that I no longer have a washing machine, and only have a
shower in my new flat, both the water consumption and the electricity should
have gone down, not almost doubled.
It seems to me that it is quite simple. Part of the reason for the
higher costs, is probably the burden of having to pay
for communal lighting and heating - although I can't see where the
communal water costs get to be so high. Surely though, such communal costs
should be included in the rent which already has charges for service and
support.
Again, it seems simple to me. If these charges were included in
the rent, then the council would have to pay for it through the housing
benefit. By keeping these charges out, and payable by the tenant, the cost is
not passed on to the council, but has to be carried by the tenants, who is some
cases are already suffering difficulties.
Towards the end of my stay in private rented accommodation,
the council did grant me additional financial assistance to cover the rent
shortfall, although it took until all my savings and other resources had dried
up completely and when I was really desperate. The same financial assistance is
now not available to cover the excessive utility bills, so I find myself
financially worse off now that I am in council accommodation; sheltered
housing no less.
£65 a month may not seem very much if you are earning a good
salary, but for someone who is genuinely unable to work, and is struggling to
make ends meet, this seems rather unfair.
About Wyndham Clampett
I have experience includes implementing Programme and Project governance, and methodologies. I used to be a confident delivery manager, experienced in successfully turning around failing programmes and projects.
I have previously served on numerous committees,
including some charities. My different activities
in the community over many years have included founding a church, starting a
local newspaper (both in South Africa), founding (and conducting) a choir in
Reading who recently celebrated their 10th anniversary, providing
counselling, and leading a church group, manning a drop-in-centre and a helpline. I was actively involved in setting up an
Opening Doors Conference (in 2003) with Age Concern (now Age UK) where I also
gave a short address. See below for more on ODL.
I have been a regular studio guest on BBC
radio and, was commended in parliament by my MP at the time (in Reading) for my
work in the local community. I was awarded the John Chard Decoration for
service with the Prince Alfred's Guard in the South Africa version of the
Territorial Army. Hobbies used to include walking, singing (and
conducting), and amateur theatrics (mainly musicals). I am an avid reader and
aspiring writer. I have a vision to widen the knowledge of
Ataxia in the general public arena, as well as medical, local and central
government. I am a member of Ataxia UK who support and encourage Ataxia
research, lobbying the government for increased recognition and support, and
also to find new ways of either providing support or engaging with other
organisations for the benefit of Ataxians.
I am also an active member of Opening Doors
London which is a charity (with AgeUK) providing information support services
to older gay men and women. As part of ODL, I am a member
of the Older LGBT Housing Group, sponsored by Stonewall. More info here
- Go to Exploring older LGBT housing.
1 comment:
Is it possible to get copies of water bills for your block under Freedom of Information Act?
You could also demand water meters in your block. There will be extra expense of sewage and drainage of the land around your block, though.
You could ask for details of any mark-up from water company bills and why.
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