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.

Thankyou! I will look into that! 💐

@JDM625 She had a physio come for a few sessions a couple of years ago but had to give up on that in the end, the physio was lovely but had no training in her condition so ended up being unhelpful, she was still trying to push graded exercise therapy even though that has been withdrawn from the latest NICE guidelines for ME as it was found to be unhelpful and can make people's conditions worse. an OT might be more use but she haven't been offered any OT visits.

That makes a lot more sense now. If you have an RN with relevant experience I can see why you are interested.

It might be worth bearing in mind that just because someone is an RN it doesn't mean they have any experience or knowledge of CFS. If it were my family member i would choose a carer with relevant experience over an RN.

I wouldn’t employ the daughter of a friend in any capacity to do care.

boundaries will get blurred.

can you contact social services and see if they have a list of carers?

Thanks. I've talked to her about it and she has a decent understanding of the condition as she has a friend who has it, and is also very willing to learn more.

Maybe it would be easier to find more of a choice of suitable carers if we lived in a city but we are in a pretty small town.

That’s very true but from what the OP has said there is literally no NURSING required here. The bits she’s mentioned are 100% care assistant or support worker tasks.

I agree doing some bank work to maintain her PIN would be a good idea.

I agree doing some bank work to maintain her PIN would be a good idea.

I didn't say that doing some bank work to maintain her PIN - I said...

If the RN is worried about not keeping up to date with hospital nursing she could do the odd bank/agency shift here and there.

You don't need to be in front-line hospital work to be a Registered Nurse.

I know that, I am one. I meant if she’s not nursing then bank nursing whether it’s community, hospital, prison, primary care, private or otherwise would be useful.

You have 2 options from an employment point of view: either the nurse is self employed and invoices you for her services. In this case she will be responsible for paying HMRc etc and will not be entitled to holiday pay or redundancy pay if that is ever needed in the future. Or you employer her privately. You can use the services of a payroll company who will calculate tax and pension etc so you know how much to pay. She will also be entitled to paid holidays so you will need to bear in mind you'll need cover for while she's off. Hope this helps.

Thankyou! 💐

I’m an RN. The number of required hours to maintain registration are only 450 hours over 3 years. That works out at just over 12 12 hour shifts a year which is actually very little. As others have said, I would be more worried about deskilling. Does your sister have a feeding tube? Does she need regular medication? How much actual “medical” care is there to do?

Thanks, no she doesn't have a feeding tube and she's on a couple of meds but just tablets so nothing much to manage. I think as people have said a care worker would make more sense in many ways but we haven't had good experiences with them before and we live in a small town so it's not like there are many options. We already know this woman and she has some experience of my sister's illness, it's hard to know what to do for the best really.

You can recruit who you like - loads of people are in jobs way below their qualifications level for whatever reason.

Having employed people as carers myself, I would say the big issue is making sure to make expectations clear up front and dealing with things when there is a problem. If your sister can be difficult, for example, I would use an agency, as it can be difficult dealing with things like this on a personal level.

My daughter worked as a private nanny - there was no agency involved- and when things went badly wrong, there was no one for her to speak to. The parents behaved appallingly but she was stuck.

You already have a relationship with this woman. You don't want to ruin it.

More Notes For Carers

Thank-you! 💐 I think she wouldn't mind the work being below her qualification level because from what she's said, her main priority is finding a job that's flexible and fits around childcare. That's been difficult with her current job. But I am concerned if it will affect her nursing registration.
My sister isn't difficult; it's her illness that's difficult to manage, largely because of her very severe sensory sensitivities, which the previous carers didn't understand even though I had explained them. She needs her room to be kept dark and everything to be done very quietly and gently, and they ended up hurting her a lot.

This is really helpful thank-you so much!! 💐

what helped...I started back dancing. I could only make about 6 one minute busts in a ballet class of an hour. Apart from that and looking after the kids I just slept or laid in a quiet dark room. Good pain killers helped. Apart from that, just time. It's been 15 years now since the onset of symptoms. I've gone from sleeping for 18 hrs a day to normal sleeping but I do need to rest more than "normal" people and I'm still conscious of only wearing soft stretchy clothing. I still can't work full time but I work as much as I can. I automatically schedule in rest periods through my day and after doing something specific like an outing/day trip. Even if I can't sleep I rest in bed. I see an osteopath weekly too. I did start off every six weeks but the better I got, the more I needed her.

Moving and Handling is person and carer specific. In some cases one person can safely move a person particularly with the right equipment and techniques, but all moving and handling should be based on an individual risk assessment and will depend on the task, skill of the person assisting, the needs and abilities of the person requiring assistance and the environment and equipment available.

An OT would be beneficial to ensure that your sister, you and any potential person to help knows how to manage things safely to avoid injury for everyone. You can usually request an OT assessment through local health or social care services, they often respond more quickly if there are moving and handling risks identified, but waiting times vary.

Alternatively private OTs may be available to you locally, the HCPC or RCOT may have find an OT services.

An OT may also be able to advise on ways to manage sensory difficulties or CFS specifically depending on their experience and qualifications.

@MamaLazerou Thank-you, it does sound like an OT could be helpful I will look into that! 💐

Have a look at direct payments. Also you can contact the age concern helpline and they also have really excellent factsheets available for every care topic including this.
There are support organisations to help individuals hire other individuals for care. There are pros and cons of doing so. There are levels of care also - without an assessment you wont know for sure the level of care needed (although im sure you have a good idea). Everyone who has eligible need regardless of circumstances is entitled to an assessment under the Care Act 2014 by the local authority - finances do not matter at this stage. They would then advise on type of support needed and what services are available including direct payments and employing own care worker.

There are home helps (Age Concern has a local list of experienced home helps many of whom do a lot of caring under that banner), also experienced carers as well as nurses. She may not need a nurse. Lots for you to look into but also lots of support available. You could also contact the ME / CFS society who would also offer advice and support.

Hiya. I’m an OT - specialist in ME/CFS & long covid.

you’ve had some great advice here. Just a few points:

im always wary of ‘one’ person being employed in a role like this. Boundaries can become blurred. They call in sick/have a bad day and it can sour things. Equally it might be lovely but what if she feels so comfy she wants to bring her children with her when they have an inset day…

As for manual handling; there is no strict law about this. There is guidance but it’s more about patient need/safety.

As for equipment - basically… if it’s been provided by the local authority and is electrical (bed/hoist/air mattress) then this would be serviced annually.

I assume there isn’t this kind of kit in the home? So maybe static stuff like a commode/bed lever just need to be monitored for signs of wear and tear.

I’ll probably think of more but I’m guessing that if no OT has visited then none of this equipment has been provided?

And grrr to the physio suggesting graded exercise therapy 😡

@Wooky073 Thank-you! She's only in her 40s though is age concern only for elderly people?

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That's great thanks!