Secondary Progressive/Carers

My husband has SP and is in his 70s. He has had a lot of falls recently, he tries so hard to maintain his independence but I think we are at the stage now where this is not helping. Have had 3 999 calls in the last 2 weeks, two major bangs to the head, he is also badly bruised. I won’t go into the details as it would take too long, but at one point I struggled physically to manage, the MS nurse arranged for the community help for 6 weeks. They assessed and said help 3 x times a day. The first NHS nurses were excellent, they came as it took a few days to arrange the agency carers. The started last night. Going through the paperwork at one point they said that they didn’t lift. The thing is between us we can wash and dress, it’s the lifting that’s the major problem. Hoping that he will get back to his old level of mobility as A & E found that he had a UTI and of course that causes all sorts of problems. He is on antibiotics and I would say there’s some improvement. Although now he is incontinent at times, which was not an issue before this last major fall. I get why they won’t lift, but there’s a bit of me thinking what’s the point when lifting is the major issue? Also, what’s the answer? Sorry if this is a bit of a ramble, think I’m suffering from lack of sleep!

You have to refer your situation back to the assessor. Presumably an OT (Occupational Therapist)? Or could have been someone at lower level in the Adult Social Care team? Either there was an oversight in the assessment or those who have been employed to visit are not complying with the assessment.

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Hi Bonnie, I’m sorry things have got so bad for you and your hubby.

But I have been through exactly the same and hope I can offer some useful advice love.

I’m 69, had PPMS for 24 years. I rely on my hubby and 2 carers for so much.

The thing you’re needing now is a hoist…a portable would be the quickest but isnt the best…but it would do for now. Nobody will lift a patient anymore…far to risky for them and the patient.

I used a portable hoist for a few weeks…didnt like it and it does really need 2 carers if patient cant do much. Then I had 2 ceiling hoists installed…brilliant!!

Ring Social Services in the morning and stress how difficult life is…tell them you NEED a hoist NOW.

Hope things improve…let us know please.

Thanks, I did ask about a hoist but the assessor said that two people were needed. Of course that does not address the issue about carers not lifting, no hoist, carers not lifting, not sure where that leaves us. Constantly ringing for an ambulance?? I supposes like a lot of people my husbands MS varies so much. However there does seem to be a downward trend at the moment. He is struggling to move at the moment. He has a hospital appointment tomorrow and although I’ve arranged transport I’m dreading it. Thanks again.

Thanks, I did think that it was odd that the main issue was not being addressed. I would say that he’s made an improvement, but its all relative of course. Thanks again

so why cant he have 2 carers to do the hoisting?

That’s a good question. At the time I assumed it was because I was struggling on my own, which I still am. I can manage if my husband has enough strength to help a bit. It’s very difficult at the moment.