Having carers, the longer post

I’ve already talked a bit about care on here before:

However, I’ve been asked a few times recently about getting carers by people who are at the point of just thinking about it.  And when I was at that point I had lots of questions and no idea where to start.  So this post is hopefully going to help with that.  If you have questions I haven’t answered, please comment or get in touch with me on twitter, @theowlgirl.

There is a BSL and subtitled video about getting care and support on youtube.

Where do I start?

First step is being assessed by your local social care team (at the council). They look at your situation, your needs, what you need help with etc. They will then decide whats going to help. It might be equipment, it might be care, for me it was both. Being assessed doesn’t force you to have care. If you do go down that route, they will do a financial assessment which is very thorough and then decide if you need to contribute towards the cost.

The needs assessment

When you contact the council initially, it’s helpful to have a good idea about the issues and what you need support with.  At least in York, they ask you lots of questions then and there on the phone.  Thankfully I had some inside knowledge and knew this otherwise I’d have been thrown and would have forgotten most of the things I need help with!

I’d strongly suggest making some notes before you make the call.  Consider personal hygiene, dressing, eating and drinking, cooking, help with medication, socialising, moving around, household chores, relationships with family and friends, your ability to take part in the community etc. The more detailed you can be, the better you’re able to get across the situation.

You will probably have adapted ways of doing things and changed your expectations so think carefully. If you are only eating ready meals because you can’t cut up veg then they need to know this. It might be you’re happy with your ready meals but equally, it might be that you’ve got used to them because they’re your only option right now. Think about how long it takes you to do things. Yes you can get dressed but it takes you an hour and causes pain. That isn’t how you should be spending your time and energy. All of this will be used to assess what support you need and if you need carers, how much time you will get.

There is an excellent breakdown of the different areas the council will look at with helpful prompts available from Rethink (PDF, page 8).

You will probably also need details of your GP.

Following the phone call which lasted about half an hour, I had a meeting with my social worker to further discuss my needs and my condition and what support would be available.  My social worker was also an OT so she also did an assessment at my flat to see what equipment could help.  She was quite flexible and we had some meetings on my lunch break (I worked at the council so we were in the same building) and some straight after work where we both got a taxi back to mine so she could do things which required us being in the flat.

If someone is currently providing care for you, such as a partner or child, they are entitled to a carers assessment which can be carried out at the same time.  This ensures that their needs are met as well.

The cost

The financial assessment looks at what income and savings you have, what benefits you get, what your rent is, how much you spent on electricity, gas and water as well as insurance and “disability related costs”. For me that includes the wheelchairs I had to buy, transport to hospital appointments, extra cost of food related to my disability (I have food intolerances), replacing clothing because recovering from anorexia means my old clothes don’t fit me etc. As part of that they should look at what benefits you’re eligible for but not currently claiming and help you claim them.

How much you pay will depend on your financial circumstances.  My care currently costs £350 a week.  My pension is £19,000 a year so it’s been worked out that I need to pay £131 a week for care (regardless of how much care I need, so if my hours increase, I still pay the same. If my care hours fall below £131 then I’d pay less). There was a while where my estimated pension was £12000 a year and at that income, I’d have paid about a fiver a week.  Essentially, for me, whatever my income is, I’ll have a “take home” amount of just less than £12,000.

Don’t wait till things are really bad…

I did this, I waited until I couldn’t consistently feed myself, I was way past being able to cook. I had been struggling to wash and dress for a long time. This meant that when I did get carers, I went straight from no care to intimate care. From never having anyone dress me as an adult to having someone running a sponge round my crotch. It was a bit intense to start with!  That said, it’s now fairly normal to have someone in the shower with me and we just get on with it.

There will be a wait

I don’t imagine, unless you are in extreme need, you will ever not have to wait. They need to sort out who you’ll be using, how much time you need, carry out a financial assessment etc.  In my case I think the time between calling the council and starting care was almost three months.

What about my independence?

I found having carers made me feel more independent in some ways. And it gave me energy back to so the things I wanted to do rather than had to. So before care, I used all my energy on dressing, washing, eating etc and had no energy and was in too much pain to do anything enjoyable.

You are also in charge of what the carer does and doesn’t do and when they do things.

I’ve done some awesome things with my carers that I wouldn’t have been able to do without them – we’ve been to the seaside, we’ve had trips to local attractions, we’ve been out for coffee, to the park and (less awesome) they took me to the other side of the country to visit my sister when she was in ICU.

What about all the horror stories you hear?

Unfortunately, it’s not always smooth sailing.  I think this is probably always going to be the case.  Some carers are better than others, some agencies are better than others, some people won’t click with you etc.  Keep with it, give people a chance but also know that this is a service you’re receiving and if it isn’t up to scratch, you have rights.

If you’re really worried, then the Care Quality Commission are the people to talk to – they’re like Ofsted for care organisations.  If you’re using an agency, talk to a manager about your concerns.

Care agency vs PAs?

I have only got experience of agency care so I can’t really comment.  I would point out though that if you go down the PA route you will be their employer so are responsible for things like tax, sick pay and holidays.  There are charities out there who can support with this and there’s a lot of information online about employing a PA.  Given the nature of my care hours, I was advised that finding PAs would be tricky; I get an hour in the morning (8.30-9.30ish) and an hour in the evening (4.30-5.30ish) plus six hours a week which are ad hoc as they’re used to go to appointments etc so can be needed at any point.

If you go down the care agency route, it might be worth asking if you can save up any hours that are not set in stone.  For example I have two hours a day plus six extra hours a week and I can save these up so I can go on day trips etc.

Other questions to ask if you’re using an agency include: Will you get the same people? What happens if they don’t turn up? Will I have set times? Will I get a copy of the rota? What if I want to move a time?

First day

On my first day of care, we started with coffee. I let them know I’d never had care before so they knew my starting point.  Ideally I would have preferred to meet my carers in advance but that wasn’t an option.  I’d say it’s worth asking though.

Having someone turn up at my door at 7.15 one morning and say hi, I’m your carer is a bit weird… Although she turned out to be my lovely carer.

You will have to explain every little thing which is exhausting. I wish I had taken my first week of care off work. You can’t just ask for a coffee, you have to say how to fill the kettle, how to turn it on, where the coffee, mugs and spoons are, how much coffee you take, that you want some cold water in it and once it’s made that you want it on the table.

If you’ve never had help getting dressed, you’re suddenly faced with all kinds of considerations; what do you do first, how do you want them to take off your tshirt – arm, head, arm or head then both arms or both arms then head. There is so much to think about when you start. And all of that is at the same time as having strangers in your home.

What if no one turns up?

Some of this depends on what arrangements you have. But chase them. Generally I would say start chasing after 15 minutes. For me, this means calling a deputy manager and if she’s not there, I have her managers number. These are in my mobile which is always by my bed so if I can’t get out of bed I can still call.

Despite saying this, I have had mornings where no one turned up and my head wasn’t in the right place to chase them. I was lucky because I was having an OKish day and could get out of bed. I also had a friend coming who helped me with everything. But this might not have been the case. So the lesson I have learnt is have a friend who is willing to chase the carers if you can’t.  And know who you can call on to come and help if your carers do let you down.

What if my carer is bad or I don’t get on with them?

If you are with an agency, talk to a manager.  You should also have regular reviews which are a chance to bring up anything which isn’t working well.  In my case I had one carer who was so unsuitable for me that i followed it up immediately.  I had another carer who wasn’t quite so bad but wasn’t great.  I kept notes about what wasn’t working and examples to share with a manager.  From my own perspective as a manager, its always easier to improve performance or make appropriate changes when you have something tangible to discuss.

Final words

Consider what’s important to you in a carer. For me, age doesn’t matter, gender does (I’m being given intimate care so the equality act doesn’t apply) but most important to me is being treated with respect and like the intelligent, independent person I am.

Getting care is a big deal, there’s lots to consider but get it right and it will have a positive impact on your life.  It also allows family members to focus more on being your husband, your child, your wife etc than providing your care.

Please please do ask me questions.  I’ve tried to cover what I thought I wanted to know but am happy to answer whatever else I can.

1st August 2016, edited to add:

I also have a care agreement that I wrote. There are obviously lots of policies that the council and the agency will have but I wanted to put something together that was personal about my expectations. Thes are things which are very specific to me.  Whilst you’d expect them to be met, they serve as a reminder. It also means if things aren’t working well, you can refer back to the agreement,”I’ve noticed you’ve been coming in a bit early a few times recently, punctuality is important to me but as per my care agreement, I would like prior notice if you’re going to be early so I can let you know if it causes a problem”

I have a folder in my house where my carers write notes etc so I stuck it to the front of that.

4 thoughts on “Having carers, the longer post”

  1. This is a great post ! At some point my Dad is going to need care (he has a degenerative back problem and my Mum currently does a lot for him but she won’t always be able to) and I’ve thought about it a lot and how I can help them and this is so informative, thank you.

    1. thanks, any questions, just shout! the hardest bit i think is the adjusment.. and if someone is used to caring for their loved one it can be hard on them. it can feel like they’ve somehow failed because they can’t provide care and they have to get used to having another person in the relationship at times

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