74 Braemore Road
Hove
East Sussex
BN3 4HB
23.10.10
Dear Nick,
You may remember me, we met at the Liberal Democrat Conference this year. I am a Lib
Dem party member and I was there with the Multiple Sclerosis Society. I am 31, I have long
red curly hair, I use a mobility scooter and we spoke about the way MS affects me. Footage
of our conversation was shown on BBC News, Sky News and CNN.
You may recall that we spoke about how you can see MS affects my mobility, but you
cannot see that it also affects my vision, my hearing, my hands, my bladder and my bowels. I
have constant neuropathic pain, spasms, and severe neuro-muscular and lassitude fatigue
which is extremely disabling. Symptoms fluctuate daily and relapses can cause instant
partial paralysis or blindness overnight.
I was admitted into hospital last week with a relapse which affected my legs and vision and I
was put on intravenous steroids. I was discharged on Tuesday. I should be resting and trying
to recover, but I can't. I am awake at 12am, desperately worried about losing my home and
my support network of neighbours following this week’s welfare cut announcements. So I
am writing to you.
I am a very positive person, but since getting MS I have lost many things in my life. I
devastatingly lost my business, (a stage school), as I had reached the point of illness where I
could no longer work. I lost my marriage as my husband couldn't cope at all with my
disability and illness and became very alcoholic and abusive. I can no longer act, dance, sing
or play the piano. I have very severe mobility problems. I have a large personal care budget
and on many days I need carers to help me to get up, shower and dress. I cannot have
children. And following the announcements this week about cuts to welfare, I am now likely
to lose to my home.
I currently live on my own in a two bedroom, ground floor, garden flat. I have lived here for
nearly eight years since I first moved in with my husband. I privately rented for years, but I
now rely on state benefits. I now need the second bedroom for my carers overnight stays
when I need them. However, I am 31 and therefore fall into the 'shared house' category of
under 35's in the housing benefit reforms. On a bad day, it can take me up to two hours to
get up and showered with assistance. How do I do this in a shared house? It takes me 45
minutes to defecate using medical aids. How do I do this in a shared house? I have an
amazing network of neighbours who help me out all the time with shopping and pop in
when I am unwell. I will lose them. Where will I keep my wheelchair, mobility scooter,
walking frame, commode etc in a shared house? I have a cat which I have had for years -
long before I got diagnosed. My cat is a source of comfort and support. I am unlikely to be
able to have a cat in a shared house. I will now lose my cat.
Nick, there is a limit to how much one person can lose in their life. There may well be plans
to protect people like me within these reforms, people who have a genuine and desperate
need to remain in their homes. But there has been ABSOLUTELY NOTHING said about it. I
just feel desperately destroyed and let down. I can't believe that my life is going to get even
harder.
Please do not tell me that you are relying on Discretionary Housing Benefit as the answer to
this problem. You have to apply every year for DHB with absolutely no guarantee that you
are going to get it. And have you ever seen the forms you have to complete? You are not
actually intending to force seriously ill people to live from year to year never knowing
whether they will be kicked out of their home at someone’s ‘discretion’ are you?
And even if I got a council house there is now an end to 'council houses for life'. I would
therefore never be secure or stable in my home.
I am currently on long-term incapacity benefit. I shall be reassessed for ESA at some point.
But from what I understand, I will have to go through the ESA assessment every single year.
I have a progressive illness. I am never going to get better, I am only ever going to get worse.
Yet every year I am going to have to fill out forms and justify myself. This is absolutely crazy,
destructive and deeply distressing.
I hope you can help me and all the other people who are in positions like mine. We need to
know that we are genuinely going to be looked after. At the moment this Government is
desperately, desperately letting us down.
I do a lot of press and media interviews. I would be very happy to meet with you publicly if
you would like to use the opportunity to explain how the Lib Dems are going to ensure that
people with severe, disabling illnesses are going to be supported during these changes.
I have also written to my MP and to Steve Webb.
I look forward to receiving your response,
Shana x
Liberal Democrat Membership Number: 8085889
