I am often asked about how I came to have a Personal Assistant and so I thought I’d share it here.
I didn’t need external help until I moved in with Mr Tree Surgeon. When I lived at home, I was cared for by my parents, and my siblings would take shifts at Anna-sitting if my parents were away. It was a real family affair.
Both my mum and Mr Tree Surgeon’s mum helped us out with laundry and making meals and taking me to appointments. They still do actually. But when I moved out (something we never imagined I would do) I wanted my parents and my family to get a bit of their lives back. To be my family and not my carers. (A comment from a GP in 2010 about how I should get better to give my parents their lives back has stayed with me. Can you tell?!)
It’s hard to know where to start. I had no idea! A desperate day in 2016 saw me googling for the number to my local Adult Social Services team as documented in Worthy of help from 2017.
It took almost a year for the ball to start rolling after the initial phone call. I was eventually assigned a social worker who came out for a half hour appointment to assess my needs.
Financial Assessment for Council funding
I had to fill out (in my own time and at my own pace) a financial assessment to see if I would need to contribute to the care package I would receive.
From my records I can see that my now-husband’s income was NOT taken into consideration when it came to the financial assessment. My income is my disability benefits – Employment and Support Allowance and Personal Independence Payment.
I don’t think you need to be in receipt of DWP benefits to qualify for help from Social Services. My understanding is that the two are separate. In my opinion you should be getting disability benefits if you qualify for social care help, but we all know it doesn’t work that way.
I qualified for far more hours than I wanted and so, because many weekly hours are so low, I don’t make any financial contribution to my care package. My local council cover all costs. Costs include the wages of the Personal Assistant, the insurance needed to employ someone in my home. Mileage allowance isn’t covered, so if my PA drives me to an appointment, for example, I must cover the petrol costs myself.
Edit June 2021 – policy changes mean that I now must contribute he cost of my care. I am waiting to hear back from my Social Worker as I cannot afford to cover the costs they are asking me to.
Occupational Therapy Assessment
I had a visit from an Occupational Therapist to see if there were any mobility aids that could help make my life a little easier.
It’s worth noting that I said Yes to everything they offered, even the toilet frame I knew I didn’t need. This was tactical. Friends had turned certain aids away and then been discharged by the local social services. It seems you have to be seen to want the help. The mobility aids that were loaned to me came free of charge.
Personal Assistant over Carer
It was decided that it wasn’t ‘conventional care’ that I needed, more someone to help me live independently. A Personal Assistant would be far more suitable. I’m not keen on the title. I prefer Home Help or Support Worker. Personal Assistant/PA makes it sound like I’m some high and mighty Executive, when really I’m just someone who needs help founding washing and chopping vegetables!
I feel lucky to have never had to have dealings with a care company. Every single one of my friends who has, has said it leaves much to be desired!
Advertising the role
The one and only PA I’ve had, was found through the charity (more about them below) that helps me with the financial side of being an employer. 5 applicants responded to the very basic advert. 3 were interviewed. 2 had trial runs (which we paid for ourselves.) 1 got the job!
My amazing original PA left at the end of 2019 and the very basic (read rubbish!) advert put out on the charity’s ‘PA Finder’ website has only seen one applicant apply. They were not suitable.
With the help of friends who’ve gone down the PA route too, I’m currently putting together a new, better and ‘proper’ advert. I’m going to share it to local Facebook groups. Some friends have had success on websites/apps like Gumtree. Once my latest advert is finished I’ll happily share it with you.
The DWP also has a website where a friend lists their ad. I can get more info if needed.
Becoming an Employer
This is where my brain seems to melt…
Luckily for me, there is a local charity that handles my Direct Payment on my behalf. Penderels Trust operate in other areas of the country too so it might be worth a look at their website. Your local social services will likely recommend similar services.
Penderels Trust work out all tax and National Insurance contributions, holiday entitlement, timesheets, payroll, deal with the HMRC, pension contributions (although it is my legal responsibility to opt in or out of the pension schemes on my employee’s behalf.) I don’t pay them for their services.
Other friends have bypassed a lot of the above by using a Personal Assistant who is self-employed. That way they don’t need to become The Employer. It then becomes the responsibility of the PA to make sure they make all necessary tax and NI contributions.
Edit July 2021 – HMRC increases to VAT costs of payroll invoices have been announced which the recipient of care may be responsible for. I am waiting to hear back from my Social Worker to see if my allowance covers these increases or not.
Moulding it to suit me
Social Services remain keen that I have a Personal Assistant as a companion, because of how isolated I am as a result of being housebound. I’m not looking for that. I don’t want to pay someone for their friendship. I actually have lots of friends; I’m just rarely well enough to see them.
The stimulus of having a stranger in the house could outweigh any benefits of having their help, so back in 2017 I chose the candidate I felt most comfortable with and the one who just cracked on and worked through my To Do list. Despite my social workers always wanting me to accept more hours and more help, I’ve stuck to my guns and not exceeded more than three hours per week, over three days.
Going it alone
I have friends who bypassed Social Services and enlisted the help of self-employed cleaners who were happy to do a few extra tasks like changing beds, laundry, and helping with the food shop. Qualifying for and receiving this help seems to be a real postcode lottery.
Accepting help can be hard
Realising you need this kind of help can be hard. Really hard. I wholeheartedly believe in rewarding yourself for doing these kind of brave things. I wasn’t sure I would qualify for any help; didn’t think i was sick enough. And yet the team at South Lincolnshire have been wonderful at gently telling me I need and deserve this help in order to regain some quality of life.
I’m now under the Adult Frailty and Long Term Conditions team. I don’t know if every county has one I’m afraid.
I’m on my 3rd social worker now. Two out of three have been brilliant, professional and supportive. The latest social worker even put me in touch with a potential new PA.
It can’t hurt to ask if there’s something your local team could do to help you too.
M.E. myself and I 
Thabks for this post and the update. As someone who is looking into moving to the UK in the next year or so, and planning to eventually move out of my parents house (mum’s my carer) it’s good to know that Lincolnshire isn’t too bad for help. We love Lincoln and mum wants to head that way eventually so being able to get help with forms, financial brain power as an employer etc would be great. Thanks again 🙂 hope you’re as well as can be. X
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