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House adaptations

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    House adaptations

    I’ve not posted for some time, as things have been pretty much on an even keel, as much as they can be with MND! But we need to have adaptations to our house for the inevitable time when we need a bedroom and bathroom downstairs. A local authority OT has visited and made some suggestions, but said a feasibility study was needed. We have now been told that as we don’t qualify for a grant (I always knew this would be the case!) we can’t access any advisory services either, even though we would be happy to pay for the work ourselves. We now need to do everything on our own, which I find incredibly daunting. I’m going to ring MND connect, but if anyone has any pointers, I’d be very pleased to have your input. I just don’t know where to start!

    Hi Polly,

    I am a bit descusted that the OT could not help you with this. Their suggestions are quite often not the best but it gives you somewhere to start from.

    I don't know if you have other OT's, maybe hospice or your Mnd one's can help.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Hi Polly,

      I thought the Council OT was supposed to give detailed advice and suggestions (even if we don't qualify for the Grant).

      I understand that if the Council project managed the work for us then they might charge a fee - but I would have thought a certain amount of advice and guidance should be provided free of charge.

      Plus there could be certain pieces of equipment you are entitled to which isn't means tested - eg individual items up to the value of £1000 each (I'm not an expert but this is what I have read in the NHS guidelines) - link provided below:-

      Also I have provided a link to information about VAT relief (on certain building work, if you have a disability):-


      I think you are right to get advice from the MNDA about this issue.

      Best wishes


        Polly, given that the Council OT seems to have relinquished any responsibility in giving you advice have you a community OT who can help?

        There are dimensions, shower & sink types etc available online and the company doing the wetroom should know what they're at, but it's always good to get independent advice and guidelines from an OT.

        You'll also find advice on previous threads here and, if you want to run anything by us before committing thousands to the project, please don't hesitate!!

        Good luck.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


          Hi Polly,

          Like Terry I’m disappointed your local authority has not offered the basic details of what is required when making a home conversion.

          Based on my own experience I can offer the following advice but it is not a qualified answer. Not knowing very much about MND when I was diagnosed I went into overdrive based on what I had read about progression.

          We were lucky in that we knew a very good builder so my first thought is for you to talk to someone local and get a recommendation. Fortunately my wife is a good designer and we have a large spare room on the ground floor. We realised that this could be divided to create a wet room with toilet and shower and a small but adequate bedroom adjacent. For the wet room I recommend a comfort height toilet or you could install a self clean/dry unit. Support rails can always be added later. Get a wall mount basin to allow wheelchair access. Wall panels are easier to clean than tiles and there are many choices for non slip flooring. Modern houses generally have doorways that are too narrow for wheelchairs so you may need to consider this. If space is a limiting factor then sliding doors can be an option.

          A good builder should be able to advise on your options once he/she has seen your home. Remember that building work and equipment qualifies for vat exemption.

          Good luck and best wishes.

          I’m going to do this even if it kills me!


            For my wet room, I contacted a specialist bathroom company in Henley, recommended by a neighbour. I too had little OT input, OTs being scarce where I live in West Berkshire. A year after it was done, I remain very pleased with it. They employed a designer who had a disabled sister, so he knew the issues.


              Thanks to everyone who has offered advice. My biggest concern is whether the conversion suggested by the council OT is practicable, because of our concerns about ventilation and drainage. That’s why I would like the opinion of a knowledgeable surveyor. I’ve spoken to our own OT, and now will be ringing the MND helpline.


                Hi Polly

                We've just been through this process. A few things that helped us:

                The local council should have lists of approved architects/surveyors and builders for these works. Ours also provided advice on which ones were most suitable for private projects like this. Our OT also had a list of suitable contractors. Going through the proposed works with one or two of these at early stage was really helpful and they came up with some good ideas. They need to warrant their works so want to get it right. They also need to satisfy and get sign off from building control , for example that they have made appropriate drainage connections etc (building control for these works is free).

                Once we had completed plans we ran these by the OT who checked them.

                There's a lot of gadgets out there now that can make your life a lot easier - including remote or touch shower controls. swipe controls for lights on the mirror etc (as well as the more common hub controlled lights, remotes for blinds etc). My wife is "gadget girl".

                MNDA will provide some support which is not means tested (they will advise). Ordering our wet/dry geberit toilet direct (using the contractor's account) was much cheaper than having an independent supplier involved.

                Hope all goes well



                Diagnosed 05/2017 Familial ALS Limb onset