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.

https://www.gov.uk/au-pairs-employment-law

start here OP

it says au pair but also covers care

Does she actually need qualified Nursing care or more just a carer? I am only asking because if it is just doing basic care friends daughter is quickly going to become deskilled and also what is the point of paying the going rate for a qualified nurse ( if that's what she will be expecting) when you could have a care assistant who costs a lot less.

I'm recently retired from working as a private nurse.

I registered with HMRC for self-assessment and declared my annual earnings and paid the appropriate tax when required to do so.

The families I worked for were not my employers - they hired me for a job, just as you would engage say an accountant, solicitor, gardener to undertake an assignment, and I invoiced them weekly; they then paid the money into my bank account.

The RN will be able to maintain her registration with the NMC as long as she undertakes the required hours of professional practise and training updates.

Thanks everyone this is all really helpful. @MickGeorge22 Mostly she just needs care rather than nursing as such, the problem is because she has severe ME which causes severe noise and light sensitivity she needs someone who understands her condition and is trained to look after her properly without hurting her. She has had bad experiences before with this from carers. So it's more specialised than just regular care work if that makes sense? Our friends daughter understands her condition and is willing to learn more about it to be able to care for her well. Do you think this would end up with her being deskilled? We would be happy to pay her the proper rate for a qualified nurse as we are fortunate to be in a position where finances aren't an issue.

That's really interesting thank you. It would certainly be much easier for us by the sound of it if she was self employed. Did you find being a self employed private nurse worked well for you? We want to make sure we are treating her fairly and not disadvantaging her in the future if she decided to go back to nhs nursing once her children are older.

Is one carer enough Op? She will need time off, probably take holidays, may be ill at times.

The challenge we found with private care was covering those instances, but in our case we were looking at daily care including lifting using hoists etc.

Thanks, I think one person will be enough as I will be caring for her the rest of the time and my other sister lives 40 mins away and comes and helps whenever she can.

If she only needs care have you thought about hiring someone who has those conditions? I used to be severely affected. Slept 18 hours a day (involuntarily) and only wore soft cotton pyjamas for two years due to sensitivity. Light and noise still cause me pain. I'm now recovered enough to care for someone privately (which I do). This could help cover holidays/days off/sickness.

@CracklingFlames That's an good idea thanks, I think it might be quite hard to find someone like that though. That's great to hear that you have recovered! If you don't mind me asking did you try any treatment or anything that helped you? My sis has tried a few things but nothing has helped and the nhs have been no use atall. 💐

@CracklingFlames Or partly recovered I should have said, sorry to hear you are still having issues with light and noise sensitivity, it's such a difficult thing to deal with and most people really don't understand. 💐

I really don't understand why you want a registered nurse? Can you tell us a bit about why? This is care work and not nursing and it would significantly deskill her.

It's not that we needed a registered nurse specifically, it's that my sister's illness (severe ME/CFS) is quite a difficult one to care for someone with properly. She needs someone who is understanding of her condition, my friends daughter is such a person and she happens to be a registered nurse.
The carers we have had before have not cared for her well and have ended up causing her more trouble than help. She is mostly bedbound has severe sensitivity to light and noise and even a tiny amount is extremely painful for her. My friends daughter is understanding of my sister's illness and is willing to learn more about it and care for her well, so she specifically is someone that we would like to hire. It's very hard to understand unless you have had experience of Severe ME, even people who have experience of mild to moderate ME/CFS don't don't tend to understand very well as it's so different.

I'm sorry your sister is in this position. 1 person alone shouldn't be hoisting, moving, rolling to dress/change etc so would you be acting as the other carer for all these occasions? What happens when the RN needs holidays or is ill. What about if you are ill? The RN would need to ensure she has private insurance in place to cover the role.

Whilst I can appreciate you know the RN, I'd consider having 2 people to care for your sister- either RN + a carer or 2 carers etc. Not necessarily on the same shifts, but alternate days or certain days a week or hours per day. They could then potentially cover each other for leave or sickness but if one had a family or other job, could work around this.

I also wouldn't discount a private carer altogether. Having different carers daily provided by the NHS is very different to someone that you hand pick, work with daily and train to suit your sisters needs. Some carers are qualified RN's from abroad who haven't applied for registration in the UK.

We employ private care at home for my parents. If you already have someone you want to work with, suggest you look at one of the PAYE services to sort out yours and their tax. We use Nannypaye as we also have a nanny for the kids.

If you are looking to find new/ additional carers (including those with nursing qualifications) can recommend Curam. Your local council / Social Services will also have a list of local self-employed PAs looking for hourly care work.

Thank you so much for your reply I will definitely consider all this 💐 I would be there as well so she wouldn't be on her own and I could assist her as much as needed. I look after my sister by myself most of the time at the moment but I know it's different with a professional as there are regulations about care ratios and things. Are there specific rules about when someone needs 2:1 care etc? Is there anywhere I could find out more info about this? Thanks!

Thanks that's really helpful! 💐 do you find it manageable sorting out all the tax and other things etc?

As kind as this nurse seems to be, on a personal level she’d be doing herself out of her registration potentially before too long.

What you’re describing is care work and I think she’d find it hard to justify revalidating with that sort of role. She’d also have no one to account for her practice, act as a line manager in terms of such revalidation and if she ever wanted to go back into “proper” nursing she’d possibly struggle and if she loses her PIN she’ll need to do a return to practice course.

If she’s considered all this and is still happy to proceed then she’ll need to do it all properly as a self employed person.

That doesn't sound good, maybe it's not going to be a good idea then as from what I understand she is hoping to maybe go back to full time nhs nursing in the future. Someone upthread mentioned they were a self employed private home nurse and kept their registration etc, so is it possible to do it's just a problem if she's not classed as doing actual nursing? Or is it the working privately in a home that's the problem? Thanks!

What you’re describing is care work and I think she’d find it hard to justify revalidating with that sort of role. She’d also have no one to account for her practice, act as a line manager in terms of such revalidation and if she ever wanted to go back into “proper” nursing she’d possibly struggle and if she loses her PIN she’ll need to do a return to practice course.

Based on my recent experience this is simply not true. You don't need a line-manager; you keep scrupulous records; deal with GP, Community nurses, pharmacy etc; attend training courses, and so on.

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.

There's more to nursing than acute front-line care and all is relevant when re-validating.

@Westfacing Oh that's great thanks. This is making me realise I don't really understand the distinction between what exactly counts as care work and what exactly counts as nursing, is there overlap?

It worked very well for me.

She will not be disadvantaged as long as she does the occasional bank/agency shift in a hospital so keeping up to date with acute nursing, and attends mandatory training courses.

Thanks! She told me that it's getting harder and harder to find any bank shifts as the nhs is really cutting back on them, she was originally hoping to do bank work for the flexibility as she has very young children. If she isn't able to do bank shifts as well would she still be ok keeping her registration etc? She's lovely and her mum is a dear friend of mine, the last thing I would want is to disadvantage her in her career in the future

Privately direct hired carers/pa’s (not through an agency) is probably what she needs rather than a fully qualified nurse. You will need have a very detailed job specification and to train them to up to your standards for their role but there is nothing that requires degree level training per se. Unfortunately I’ve had to learn a lot about ME but what is needed to very specialised input from experts to work out how to work towards improvement (very long journey) which might mean other specialists rather than a general nurse or carer.

best wishes to you all and hope that you get on the path soon

Thankyou! It's good to hear from someone with experience of ME 💐

Some other considerations.

You said she is mainly bedbound. Does she already have an air mattress and hospital bed? Hoist, moving sheets, stand assist lift, commode etc? If you have such things already, I assume social services provided them. If you no longer use NHS care, I wonder if the equipment also gets removed? If not- who maintains it going forward? Years ago when I worked front line, hoists etc were checked and certified annually, but I'm unsure of the frequency in a home setting.

You asked about 2 to 1 care. I'm afraid I don't know of a specific website to look at, but it would be patient manual handling. Any moving, lifting, rolling, hoisting etc for a bed bound patient always requires 2 people to do so. RN's/Carers also need to be trained to use the specific equipment you have in the house.

I've likely provided more questions than answers, but they are things to think about or possibly get more info from social services.

I meant to add, is she also getting support from a physio and/or occupational therapist?