Frustrated

[Bea6]

Good morning everyone, I was just wondering if anyone had any advice I’m very frustrated at the moment as I live in a rented housing association flat which has three steps up to the property. As I have now deteriorated I am unable to do the steps and require a wheelchair. I’ve been going through this process for several months they have refused to give me a slope as they say the incline is too steep for their criteria. I appealed against this as I am certain there must be a solution to this . I spoke to my social worker yesterday who said the choice I have to make is if I stay here I have to be prepared to be housebound… Or move to more appropriate property this would not be my wish, and will be very expensive to move and I have a good support network around me here I just don’t know what to do for the best really as I feel so poorly facing another move is not what I need right now. Why am I says advancing quickly and I just want to finish my days peacefully in my home. And I feel I should be allowed to do that but the council are refusing all help. Added to this I had a financial assessment for my care package and they want £100 a week towards my care which they agree I do not have enough on my benefits. So again I am unable to have a care package at this current time until that I can find the money to pay for it. This disease is so cruel as I am 53 and have now used all my savings since I’ve been ill paying for helping the house et cetera. They said that if I was over 65 there is much more help they could offer! Reality is I’m not going to make it to 65 where is their empathy and care? I feel so low and I’m losing the will to battle against everything.

Bea

[Yanno]

Hello Bea.

Have you been in touch with the MSA Trust? They have an advocacy officer who’s role is to give advice in situations such as you find yourself in. Her name is Jane Stein and if you contact the Trust they will be able to put you in touch with her.

Jane came to our support group meeting last year and she is coming to our May meeting in Tewkesbury.

Good luck, I hope she is able to help you.

Take care, Ian

[Bea6 in reply to Yanno]

Hi Ian yes I’ve been in touch with Jane and she is a great help and support and he’s trying to help me. Unfortunately Jane said there are different criteria for councils with adapting properties but she is looking into it for me. Bea

[FredaE in reply to Bea6]

Sounds dreadful. An idea which may be no help at all. You can buy vehicles adapted for wheelchairs which have a winch arrangement that pull the wheelchair up a steep ramp into the vehicle. This means that th technology does exist for pulling wheelchairs up ramps. The other faint possibilty is a charity where engineers design and make bespoke technical items for people with disabilites. They may have experience in extracting a bit of co-operation from organisations. Next try your MP. Bodies like Housing Associations can be very unhelpful indeed and a bit of outside pressure may help them change their minds. Good luck and keep up the pressure.

FredaE

[Hellebelle]

Hello Bea,

There are staggered ramps for steep slopes which are made out of marine ply. You would need to have enough space for this. An OT would advise, but it sounds as if you might have already had an assessment and this might not be a possibility.

As Freda said there is an organisation called REMAP made up of volunteers who are usually retired engineers who will see if there is a solution to the problem. They are very skilled and knowledgable people and there might be a solution they can suggest. It is a national organisation but they also have volunteers in many areas of the country.

Their number is 01732 760209. remap.org.uk

There is also a stair climbing wheelchair, although you would need assistance to operate this as well as equipment that you can attach to the wheelchair to make it easier to go up and down stairs.

I really hope that you can find a solution Bea. Please let us know how you get on.

With love. Helen xx

[Bea6 in reply to Hellebelle]

Thank you so much that’s really helpful I will contact them today and see what they can do. I think it’s a total lack of understanding and empathy from the social worker and the council. It really does sound from their point of you that my prognosis is not good so why spend a lot of money when my life is limited. It’s a very difficult place to be as my body has given up but my mind is still strong at the moment. Many many thanks for your kind reply and I will follow this up and keep you updated thank you again Bea

[Hellebelle in reply to Bea6]

Hi Bea, I am sorry you aren't being helped as much as possible. It isn't acceptable to dismiss people because they have a condition such as MSA. It should be the Social Services duty to help you to maintain your independence and enhance your quality of life. Unfortunately, the services are patchy and the workers have pressures put on them to spend the least amount of money possible. However, if you lost your independence and had to be cared for in residential care it would cost them a lot more!

I hope the advocacy officer at the MSA can help fight your corner.

Wishing you well Bea.

Helen x

[LAJ12345]

Can you arrange a slope at your own expense,eg get a builder to make a removable one at a much less steep incline or is there not enough space?

[Bea6 in reply to LAJ12345]

I am looking into this and getting quotes but apparently the housing association that owned the property so I’m not allowed to do that as it’s on there property. So I’m getting advice on this bea

[LAJ12345 in reply to Bea6]

Are you not allowed it even if it is easily moveable?

[Bea6 in reply to LAJ12345]

I’m going to look further into this because the housing officer said no because it goes out onto a public path way. But if you put it down use it and then remove it I don’t see the issue I think this is just a fight that may take a bit of time to sort out but I think it’s underpinned by money issues. Many thanks Bea

[LAJ12345 in reply to Bea6]

Good luck🙂

[Hidden]

Hi Bea, that sounds really hard and stressful. Councils have a set gradient for ramps, beyond which they can refuse to install one. It's what they consider to be a safe angle for somebody to push a wheelchair up. But I wonder whether a housing association would be tied as strictly to that. In most areas, there is usually some kind of disability advocacy organisation for all ages. I wonder whether finding a local advocate would boost your support. (Now, and in future, if other big choices come up. Maybe Jane, or citizens advice could put you onto them). Alternatively, a befriender with the specific aim of them supporting to you during the process of appealing everything. (There can be a waiting list for them). I know you have friends already, but I know I sometimes find it easier to lean on people who are less close. I know someone who went to their local newspaper about cuts to their disability funding. It seemed to help.

All the best!

Kx

[Hidden]

I meant to say, now might be the time to press for a community occupational therapist to be involved. To have a general consideration of your future care needs in relation to your home. Because I hear your determination to stay in your own home. For example are there any restrictions to installing hoists, is there clearance for two carers around a wheelchair/bed? Will you need level shower access, etc. Can the social worker provide concrete alternative local options and timescales? It's not impossible to stay in your own home. We've managed it for Dad, although it did involve one local house move, (as there were 40 steps in total in the property and no shower access).

Kx

[ChocolatePot]

Morning Bea. We do not have social worker (yet), but we had an array of OT's. Everyone has had different ideas and the current one has left us some telescopic ramps. They are not permanent and even tough they are heavy lumps, at least we got some ramps to get hubby in and out of the house when the time comes. We have had tons of equipment thanks to the various OT's, so worth pressing on and asking/begging.

[TK-67]

I'd agree with KayR11 - it might be worth having a full assessment, knowing all the things mum now needs and how quickly things can change, future proofing at this point would help you with your objective to stay at home, it is complicated and doing it early on can really help..