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Derick

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Derick

Some 20 years ago my home was revamped to become disability friendly including wheelchair access so the bath was taken out to create flat floor access into a power shower especially for incontinence. This shower has now become defunct and have spent today, whilst waiting for a replacement, to find somewhere I can shower to clean myself. I have tried care homes but health and safety say no - the university medical practice I am at do not have shower facilities. Social Services have become resource led rather than needs led so not an avenue to explore.

 

The frustrating aspect is contacting people who should be in a position to help such as the MS nurses but messages are ignored. Does anyone have any idea of anywhere I can try. The only option is perhaps pay for a hotel room which will be costly considering I am on a pension.

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Sleepy
Scully

Hello Derick,

Welcome to the forums.

Have you tried contacting your GP practice for help? A lot of GP's have access to various care facilities who may be able to help. I would phone them and ask for an urgent appointment with a GP, in fact that you are seem today.

I am surprised your MS Nurse isn't responding to you?

You could try contacting your local MS Society Group, these local branches very often can help in your situation.

I hope this helps a little, I do understand the frustration involved, and this won't be helping your MS for sure!

Scully

 

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Sluggish
Marina

That sounds like a ghastly situation you find yourself in, Derick.

 

MS nurses: have you tried hounding them with emails and phone calls in an attempt to get them to contact you faster? In my area, for instance, if I phone to make an appointment, I can be told the next one is 3 or 4 weeks away... which is a fat lot of use when one has MS! When I told my MS nurse this, she said to always phone her mobile instead. Sending her an email might take a few days to a week to get a reply, though. From what I’ve heard, different MS nurses act differently when it comes to getting hold of them.

 

You might also want to try the MS Trust’s “Map of MS services”. It’ll show you a list of all MS nurses and various MS services in your area that might be able to help, such as occupational therapists, disability living centres, local support centres/groups, therapy centres (as they might have showers you could use), respite organisations, etc:

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

 

Otherwise, maybe also try phoning all the MS charities, as Scully's suggested.

MS Trust - 0800 032 38 39

MS Society - 0808 800 8000

MS-UK - 0800 783 0518

 

I hope you’re able to find a solution soon!

  • Like 2

Marina

(belated DX in June '05, SPMS)

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Nick

Hi Derick,

 

I can only reiterate what has been said already. Have you tried these people? http://www.merciamstherapy.org.uk

 

Hope things get sorted! I know the importance of a wet room.

 

Nick


Just another Warrior...........

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Derick

Very many thanks for those who have repsonded to my current plight. Birmingham has adopted a system which is no longer user friendly where, in the past, you could contact a duty social worker directly but now have to go through an advisor with a landline nuimber which took 30 minutes to answer!

 

I have tried everywhere - even the local YMCA - but of course motorway service areas offer free shower facilities but dangerous to use - I am now waiting for authorisation to meet the cost of a hotel room from my direct payments. I am nearly £600 in credit for contingency but what is the meaning and is not the ability to clean oneself 'care'? Seems there is a different interpretation of 'dignity' and independence.

 

I am going to take this up with the adult safeguard committee simply because disability - which is not only diverse - but highly individual where coping mechanisams differ from one person to another. Can I add, as gay pensioner with MS, I have no contact with the local MS group due to homopobia plus, other than MS, have nothing in common in what essentially is a heterosexist environment.

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Sleepy
Scully

Your sexual orientation should make no difference in this day and age should it....unfortunately not everyone takes that view.

 

I'm not sure what else to suggest other than push down the paths you are doing, and keep on at your MS Nurses.

Has your GP surgery suggested anything for you. They are in touch with various carer facilities these days.

 

Scully

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Derick

Thanks Scully - my GP practice is a new state of the art building, being the University Medical Practice, but does not have any shower facilities but eventually a social worker responded making representation on my behalf to ensure replacing the shower is a matter of urgency. A hotel room as temporary measure was refused but what we have in Birmingham is a Rapid Response Team whose primary aim of the service is to prevent patients, in their own home and under the care of their GP, from being admitted into hospital if they become unwell and are safe to remain at home.

The service offers a 7 day service between the hours of 8 am till 10 pm.

My biggest bug is social isolation due to an identity crisis of who am I, what am I and where do I belong because services for elderly LGBT people is sadly lacking. To be placed in exisiting services would only serve to exacerbate further isolation. The 'coming-out' process is never ending having to continually justify why suggestions are not compatible.

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Nick

I can see just how difficult it must be Derick. As Scully says, in this day and age who you are should make no difference on how one is treated, but clearly it doesn't always feel like that.

Social Isolation is something I too worry about. I have the luxury of family to back me up but not all of them understand MS. Just having this forum is really good. I love the fact that we have so many people from so many backgrounds and too me it has always been a friendly place. Your problem of lack of showers facilities is just so important and again the only way forward is to keep on nagging people. It seems these days we are all in the same boat of having to always chase up everything we need, when if you believed the official line everything is simple.

 

Anyway I'm sorry I can't be much direct help, but it's lovely to see you posting here, just that alone can help

 

Nick


Edited by Nick
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Just another Warrior...........

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Nindancer

My heart goes out to you and I wish I could be of some help, I really hope you do get some support very soon!

As for the isolation, I don't know how the hell people with MS got by before the internet, let alone with anything else to contend with - I'm in loose contact with a girl a couple of years younger than me... when we were kids, I used to make him up as Adam Ant - I understand her Mum largely blamed me for what happened later on. Sadly the last time I saw her, was at her Mum's funeral but I can safely say that she suits her far better than the awkward little boy ever did! When we met again almost 25yrs later at her sister's wedding, it was funny that we even owned similar cars and we just naturally clicked - sorry to waffle, I hope you get y point.

Sonia x

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Marc

I sometimes wonder what sort of world we live in where disabled people struggle to find support for what are such basic needs. As for homophobia, jesus wept, it's 2017!!

 

I hope you get the support you need as soon as possible, wishing you all the best in that respect.

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It's not the hand I wanted to be dealt but I'll play it anyway.

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Derick

This 'coming-out' process is never ending as it is always with trepidation whether to live a lie or be open and honest about being gay especially difficult from previous adverse encounters. Some time ago I was queer bashed by a drug fuelled near neighbour who kindly knocked out all my teeth!!

 

It is therefore refreshing to find this group in being accepting and not all judgmental. Really - thank you!

 

Nindance - your response was so sweet so must share with you my own story where, five years ago, I met my soulmate who is much younger than me but for some strange reason loves me, despite MS, who wants to eventually make the relationship more permanent. Talk about 'Little and Large' with him being 6' 3" to my 5' 8" plus, due to his relative young age, Beauty and the Beast where I, due to daily injections of ACTH (strong steroids) when originally diagnosed, I get mistaken by children as a mobile bouncy castle as I wobble down the road Not only the internet but Skype and WhatsApp keeps the relationship alive until we are able to live together.

 

The shower saga continues with no move forward even writing to a local councillor asking for their intervention. Am unsure why people, who supposedly wish to serve on the local council to represent constituents, put themselves forward for election as their presence is useless save for self interest. The replacement shower is now being knocked from one department to another where the concept of being a 'vulnerable adult' is deaf to the ears. This stressful situation is now having an adverse affect on MS as find I am talking to brick walls at times.

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Nindancer

He sounds like a good one to me:spin:

Amazing timing tho, my friend got in touch on facebook yesterday :hearts:

Sonia x

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Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

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