I am 50, diagnosed with Charcot Marie Tooth disease (CMT) in 1992. The condition affects my peripheral nerves, leading to muscular atrophy, chronic fatigue, and a lack of sensation from my fingers to my elbows and from my toes to just above my knees.
August 2010 – the posterior cruciate ligaments in my left knee ruptured. Because of the weakness caused by the CMT this could not be fixed and meant that I could no longer walk or even stand.
I live in a 2 bed semi, which cannot accommodate ramped access or a stairlift, both of which were assessed as being urgently required if I was not living on 1 floor. I own my house but I do not have enough money to buy and upkeep a bungalow as I cannot work anymore.
October 2010 – After a referral from my occupational therapist, I was assessed by the local housing trust and they put me in the “Urgent” category for an adapted bungalow under their “Choose your Home” scheme. The Council sold all their social housing stock to Wrekin Housing Trust several years ago.
The scheme worked on a chronological basis so anyone already in the urgent category would always be ahead of me.
In 2013, I got a bad infection in my left knee. It haemorrhaged and I had an above the knee amputation. Because of the weakness in my other leg and hands, a prosthetic is not an option.
By mid 2014, I had worked my way to the top of the list, only for the local housing trust to cancel the scheme as they claimed it gave people false hope of getting a suitable property (which was obvious nonsense in my case as I was at the top of the list). They now prioritise existing tenants and pensioners, irrespective of medical need, so I have gone from top of the list to not being allowed on the list, even after following their rules. I complained, but they basically said “tough” and repeated the line about the previous scheme giving false hope.
Just after the election I wrote to my MP, Lucy Allan, however no help has been forthcoming to date. I also wrote to then Housing Minister, Brandon Lewis. One of his staff replied, saying that he could not intervene with a dispute with the housing association. I also wrote to then Minister for Disabled People, Justin Tomlinson. One of his staff replied, saying it was not his remit.
Telford and Wrekin Council have a website called www.telfordhousingoptions.co.uk but this is a waste of time for someone of my age and in my position. The link to private landlords has never offered a bungalow, let alone an adapted one. The link to the local housing trust is obviously a waste of time and nu place, a local private lettings website, also do not offer adapted properties.
Homes Direct also has never had a suitable property in Telford and tends to offer me the chance to bid on flats in Stoke and Birmingham in buildings without a lift! I complained and said this site offered no options and they told me that I should find a private landlord who is willing to have their property adapted. I would then have to pay for the wet room, remote control access system, widened doorways and ramped access, and possibly kitchen at the right height for my wheelchair. As the landlord could then chuck me out with a few weeks’ notice I told them no chance! They said they would see what they could come up with.
Sanctuary Housing do offer accessible properties, but they cost over £1,000 per month (double the cost of an adapted bungalow/flat from the local housing association and a typical private rental flat in Telford) and only available to over 55s. They also have a long waiting list. For under 55s to go on the list you also have to take out a care package which would make it even more unaffordable, even if I got to the top of their list.
I am left in the position where the discrimination I have experienced means that I currently have no chance of a safe, suitable property. I have had to come down the stairs (using very weak limbs) on my bum for 8 years, and up the stairs the same way (which is very difficult and painful) for 6 years. Last year I got a serious infection in my elbow, which my GP said was caused by having to put my weight on weakened joints going up the stairs. Since then I have had 2 further housing related injuries, to my knee and ankle. In total the 3 injuries have needed 20 weeks of NHS treatment over the last 16 months.
There are 2 steps into my house. I have to enter and exit on my bum and I also have to shuffle the 10 feet to my car on my bum, which is rather demeaning and undignified. In 2010 I was assessed by wheelchair services as being in need of a powered wheelchair but I cannot get one until I have a suitable property.
After reading Breaking Point, the Muscular Dystrophy UK report on the lack of adapted housing, I wrote to them and they put me in touch with a solicitor who is still looking into the situation. Sadly I don’t think they can help due to all the loopholes in the Equality Act.
I have sent supporting letters from my GP and neurologist and the community matron has also directly contacted the local housing trust, confirming that my housing is exacerbating my condition, but they are not interested. My MP has also had a copy of my original housing assessment confirming my urgent need and “immediate risk” to my health of my current housing, and the letters from my neurologist and GP, but has still not given any help to date.
It is sad that you get penalised for doing the right thing. I have saved the taxpayer a lot money because when I was discharged from hospital after my amputation they wanted to put me in a nursing home, but I refused. If I had done so then most of the proceeds of my house would be gone and the taxpayer faced with a £500+ per week bill.
I don’t think much can be done re my situation, but it does highlight how poorly disabled people are being treated, especially those of working age.
By Richard from Telford