Out and About
23 January 2019
I'm severely disabled with a condition called Neurosarcoidosis, which is very rare. I'm basically crippled from the waist down, I'm wheelchair bound 24/7 and need a hoist to transfer me from profile bed to wheelchair and vice versa. One of the pleasures I have is going away on holiday once a year with my husband, but there are only a handful of places that have suitable accommodation. We have a challenge each year finding accommodation, we cannot simply say we're going to Great Yarmouth, because the nearest suitable accommodation could be 20 miles away! My condition presents itself a bit like the symptoms of Multiple Sclerosis, but technically it isn't, but you are paralysed from the waist down in a similar sort of way. A few years ago we found the perfect accommodation which had a hoist, profile bed, wheel-in shower and wet room which was run by the MS Society, but was told that we couldn't book this accommodation, because I hadn't actually got MS! I was very disappointed and thought this was just somebody's "jobsworth", but found only people affected by MS are able to use these services. This is because the MS Society are bound by charitable law and can only work within their charity objects which are to work with people affected by MS only. I did feel that this was rather insensitive, but it is an important piece of charitable law to ensure that money raised (i.e. MS donations etc.) are only to be used for the purpose for which it was raised.
The MS Society Head of Local Networks confirmed that we couldn't use the accommodation, because of charitable law - this even applies if we were wanting to pay the going rates for the accommodation, because someone who had MS may want to use the accommodation for the same weeks that we would want! Hence we couldn't address it and felt discriminated against. The Disabled Holiday Market is ever decreasing, with Can Do Holidays, Livability Holidays and Disabled Holiday Information all recently stopped trading, so you would think other charities and societies would think about embracing their facilities, but it doesn't seem to be the case.
Very Disappointed and Depressed.
There are only a handful of Hotels which really do cater for the Severely Disabled Person, but there does tend to be more self catering accommodation which has suitable facilities. If each hotel group would have at least one room in its hotel which had ramped access, a profile bed, ceiling hoist and a wheel-in shower and wet room, that would be a great start - also if we could have a "trivago" for the disabled world that would be great too, but the nearest we came to that was the Disabled Holiday Information website which had lists of holiday accommodation and superb search facilities, but sadly that shut down with lack of funding and not having enough staff to reassess accommodation on a yearly basis. Yes their are sites like Open Britain, AccessAble, etc. but these don't really have suitable search facilities and really there needs to by a focused approach by the government of Property Classification and Licensing . The Severely Disabled person needs more than widened doors and a ramp, which classifies only as "Disabled Access", which doesn't really cut it.
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Dear Anita, I notice from your comment that you also have neuro sarcoidosis and I thought you might like to keep in touch with me as it would be good to share our experiences. I am on Facebook if you would like to be friends, just put my name on and I can be friend you xxx
I also have sarcoidosis neuro and pulmonary and find that as it is very rare we have no support systems to use. We are not even exempt from prescription charges.
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