Hiring a private home nurse for disabled family member

[Sandy91]

I wonder if anyone can help. My sister who lives with me has a severe chronic illness that causes her to need a lot of care. She has had very poor experiences with the NHS and social services. Her illness (ME/CFS) is not one that many people seem to have heard of before and she has had some very poor treatment. We have been thinking of hiring a private part time nurse for her instead.
The daughter of a friend of ours is a qualified nurse who is unhappy with her current job as she is struggling to find part time nursing work to fit around childcare, and we had a chat with her about potentially employing her ourselves as a home nurse for my sister. She is keen and after chatting to her about it we feel that she would be ideal, but doesn't know how it would work as she has only worked in the NHS.
We would be employing her directly without an agency, and would be paying for it ourselves. It would be for around 12-16 hours a week?
Does anyone know how this could work and how to go about it? Would it be ok for her in terms of maintaining her nursing registration etc? How would it work for taxes, sick pay, pension, etc etc? Sorry I'm a bit clueless as we've never done anything like this before.

It doesnt matter - the info in the factsheets is relevant by topic and need for any adult with care needs.... not just for older adults. In fact the name has now changed to Age UK. Here is the link - https://www.ageuk.org.uk/services/information-advice/guides-and-factsheets/ look for the social care topics - for starters FS6, FS46, FS41 and FS42 may be relevant but specifically FS24 which is about personal budgets - with which you can purchase your own carer. As you can see there is a factsheet for just about every topic you could imagine. its really good factual and reliable / credible information. In sure the helpline would also be useful and signpost you to further support. Best of luck !

@Wooky073 That's great thanks! 😊

Thank you so much for your reply. 💐
That's great you specialise in ME and Long Covid, It's so needed as most people know so little about them, even healthcare professionals.
Do you work for the NHS?
What you're saying does make sense about not only hiring one person, but we don't have many options where we are, and it's difficult to find suitable people.
The only equipment we have we had to buy privately. Luckily we live in a bungalow, which makes things easier. She has an adjustable bed, but I don't know if that's really considered medical equipment. It's one of those that adjusts with a remote control, and it has a lever thing that I bought separately but attaches to the side.
With that and me helping, she can transfer from the bed to her wheelchair, but she has to spend almost all day in bed at the moment because she can't tolerate sitting upright for more than 5 minutes at a time.
She also has a commode, a shower chair and rail for when she can manage a shower, though that's difficult these days, and those bed bath wipes for the rest of the time.
Do you think it would be worth us trying to get an OT visit? I doubt there are any specialised ME ones where we are, but do you think they might still be able to help atall?

Hiya. Yes I do work in the NHS 🙂. There’s not many of us about! I’m in a clinic role now - no home visits.

You sound like you’re doing an amazing job.

Yes please do request OT via the GP. It different according to area whether your sister would be referred to community NHS OT or local authority.

the equipment you have sounds great. I’d want to check the mattress and wheelchair cushion is appropriate. Pressure ulcers are a risk. Oh there are also specialist armchairs that have integral pressure relief and can tilt/recline etc. this can be a nice option for being out of bed but still more relaxed than a wheelchair.

the one thing I’ve found with privately purchased beds is that they don’t tend to be height adjustable. The benefit of the ‘standard issue’ profile beds from OT is that you can lower to get legs in easier but raise it for transfers out if standing.

the configura comfort is the chair that I would consider. 🙂

I’ll do my best to answer anything else you can think of.

@OTinthewild Thankyou! It sounds like it would definitely be worth us getting an OT visit, my sister had the bad experience with the physio and we'd given up trying to push for any more NHS support, but it sounds like an OT would be much better. Yes I have been worried about her getting pressure sores because she's stuck in bed so much. I've been worried about her circulation as well and wondered if getting some compression socks would be a good idea but she was worried they would be painful, she has to wear very soft loose clothes or else they hurt her. I'll look into that chair as well that sounds like a great idea. Thanks so much for your help! 😊

You’re welcome.

I’d avoid compression socks. They can be helpful for people with POTS but clinically not indicated for much else (except post surgery but even that’s up for debate!)

the material is usually pretty sweaty and can get nasty little wrinkles/dig in.

it can be a double edge sword - trying to make sure pressure needs are met without exhausting the person by lots of transfers.

there are some great products out there including overlays on existing armchairs - look at repose. It’s like a lilo with a cover but pretty effective !

@OTinthewild Ah yes that makes sense. Great thanks I'll have a look! 😊

Hi OP, I have ME/CFS and Fibromyalgia, also mainly bedbound and with sensory issues, although I don’t think I’m as severe as your sister. My partner contacted Adult Social Care within our local authority and they provide a certain amount each month to help me employ a carer, and although I know money isn’t an issue for you, they have been really helpful with all other aspects too. One thing I would say is that unless the person you have in mind does other work for other people, she will not qualify as self-employed and must be taken on an employed basis. Apologies if this has already been said, it’s too much for me to read the whole thread! I have also had a wonderful OT via my GP helping me, which has made a big difference, but appreciate this can be a lottery. GPs themselves have been useless.

Thank you so much for taking the time to reply especially when you are so ill yourself 💜 💐
We didn't have much luck with social services before but we could always try again I suppose.
Thanks I hadn't realised that about self-employment, the whole thing seems so complicated!
It definitely sounds like an OT would be a good idea, so we're going to try that for sure. 🙂