Being a disabled person in Britain today

In 2017, the United Nations declared that the conditions for disabled people in Britain were tantamount to a ‘human catastrophe’ and things haven’t got better since.  In this post, I want to give a brief overview of what life is like for disabled people in Britain today. 

Whilst the Covid-19 pandemic is further erasing our rights and quality of life, I want to focus here on the pre-coronavirus situation.

The United Nations report drew attention to the high levels of poverty experienced by disabled people and the insufficient resources available to support disabled people to live independently in the community.  Further, it found that:

“Most of the breaches – which were all under articles 19 (independent living), article 27 (work and employment) and article 28 (adequate standard of living and social protection) of the convention – were caused by policies introduced by Conservative ministers at the Department for Work and Pensions (DWP) between 2010 and 2015.”
Disability News Service

Austerity and Cuts

“From its election as part of a coalition government in 2010, the British Conservative Party under David Cameron oversaw a programme of cuts not seen since the 1920s.”
Frances Ryan, Crippled

In 2013, the Centre for Welfare Reform established that disabled people would feel the government spending cuts more significantly than non disabled people:

“The cuts are not fair.  They target the very groups that a decent society would protect:
People in poverty (1 in 5 of us) bear 39% of all the cuts
Disabled people (1 in 13 of us) bear 29% of all the cuts
People with severe disabilities (1 in 50 of us) bear 15% of all the cuts”

Graphic from the Centre for Welfare Reform illustrating the disproportiate impact of the cuts on disabled people

Disabled people as lazy benefit scroungers

In order to get away with this unequal allocation of the burden, it was necessary to cast those affected as liars and cheats and lazy benefit scroungers.  The government vilified us, cast us as fakers and frauds.  We have been treated with contempt, suspicion and generally treated as less than human.

There has been an increase in hate crimes, fuelled by resentment as the wider public are led to believe that disabled people are handed everything on a silver platter.  The government has been emphasising the idea of disabled people as lazy, wanting to get something from nothing and being a burden.  People are treated cruelly and it’s often assumed we are faking or exaggerating our disability for the benefits, the blue badge and so on.  You feel the need to prove, over and over again – to the government and the public – that you really are in pain or really are disabled or really do warrant that blue badge or seat on the bus.

“The level of scrutiny all benefits claimants feel under is so brutal that it is no surprise that supermarket giant Sainsbury’s has a policy to share CCTV “where we are asked to do so by a public or regulatory authority such as the police or the Department for Work and Pensions”. Gym memberships, airport footage and surveillance video from public buildings are now used to build cases against claimants, with posts from social media used to suggest people are lying about their disabilities. More and more private companies are being asked to send in footage. The atmosphere is one of pervasive suspicion, fuelled by TV programmes such as Benefits Street… The number of benefits investigators has increased substantially in recent years, from 2,600 to 3,700 from 2015 to 2016, while only 700 people investigate the super-rich. This is despite the fact benefits fraud costs the government around £1.3bn a year compared to around £34bn for tax evasion.”
The Guardian

The reality of benefits

In reality however, being disabled is hard work, frustrating and expensive.  It costs more to be disabled, both financially and emotionally. 

On average, a disabled person faces additional costs of £583 a month compared to a non disabled person and one in five disabled people face costs in excess of £1,000 a month.  It’s been calculated that it’s 43% more expensive for families to raise a disabled child compared to a non disabled child.

Then there is the idea that we are all faking our disabilities which comes with a high emotional toll and doesn’t have any statistics to back up the idea.  It was estimated that Disability Living Allowance had a fraud rate of just 0.5% and yet the government still felt it necessary to replace it with Personal Independence Payment.

Further, the government’s propaganda has led to people believing that 24% of benefits claims are fraudulent when the reality is an estimated 0.7% of claims.

And if that emotional toll is not enough, living on benefits is difficult.  If you receive Employment and Support Allowance you could be getting as little as £70 a week.  If you get ‘lucky’ and receive £100, that works out to be the equivalent of being paid £2.70 per hour for a 37 hour week.  It’s £14 a day.  To cover groceries, utility bills, any rent or mortgage payments, phone bills, transport costs and more.

In 2018, Joseph Rowntree Foundation found over a third of all adults living in poverty are disabled.  Scope, in 2017 found one in 5 disabled people were living in food poverty; routinely skipping meals and missing vital nutrients which in turn is likely to have health consequences of its own…

Measures introduced since 2010 include the bedroom tax, cuts to council tax support, changes to the benefits system which reduce how much disabled people receive as well as the number of people eligible and the introduction of Universal Credit.

“As of 2017, new recipients of one category of ESA have seen the benefit shrink by almost a third – down to seventy-three pounds a week – with half a million people who are too disabled or sick to work set to lose over £1,500 a year each.”
– Frances Ryan

A key way the government was planning on saving money was by reducing the number of people getting disability benefits, meaning they went into the changes with targets.  Specifically, ministers were estimating that 500,000 fewer sick and disabled working age people would be eligible.  This of course meant tightening up the criteria and refusing people who were eligible.  So many denied applications have been approved at appeal – 71% of welfare benefit appeals overall had the initial decision revised in favour of the claimant which reflects shockingly on the quality of the initial assessment and decision making process.  It’s almost as though they are hoping people don’t have the energy to appeal…

Another way the government is able to save money is through sanctions; withholding benefits because the claimant has done something ‘wrong’ such as not turning up for a review because they were in hospital.

“Between 2013 and 2014, sanctions against disabled and chronically ill people rose by 580 per cent.”
– Ryan

Going through the benefits system has an impact on both physical and mental health and at the same time as the government is making it harder to get benefits, it is also cutting the support available to help disabled people in the workplace.  Access to Work is a scheme which pays for things like equipment, computer software and interpreters to help disabled people at work.  Cutting the funds available mean less work opportunities and hence less income and more reliance on benefits.

Even if you are in work, as a disabled person you are more likely to be in an insecure, low wage job and in 2017 it was reported that the pay gap between disabled and non disabled people was 13.6%.

Social Care

Social care is yet another way that disabled people have been hit by cuts.  Billions of pounds of money has been slashed since 2010, money that helps disabled adults as well as older people to live at home.

So often this is portrayed as being about older people but disabled adults, including disabled adults in work, are a significant chunk of social care packages.  This means that money spent on social care helps to keep people in employment – if you haven’t got the help you need to get out of bed or get dressed, then you aren’t going to be able to go to work.

A study by Scope in 2015 found that 8 out of 10 disabled people don’t have enough social care hours.  The reality of this is people waiting hours to go to the toilet, not getting washed or changed daily and not being able to cook or eat.  If you do have the hours you need, they may well not be at a time you need.  I was regularly put to bed at 5.30pm, despite being in my 20s. 

Funding for social care is mostly discussed in terms of older people being forced to sell their homes but there are many disabled adults who are forced to pay a contribution towards their care.  Whilst this is couched in terms of a proportionate amount, the reality is they take any income above the amount that you would receive in benefits.


Research from 2016 found that 1.8 million disabled people were struggling to find accessible housing.  Further, one in six disabled adults and half of all disabled children live in housing that is not suitable for their needs.

This goes beyond just being frustrating and is actually dangerous, as well as expensive.  Poor housing costs the health service £600 million every year, such as falls, poor mental health because of the housing situation, people being unable to get to the bathroom to shower etc.  It also impacts on the health and wellbeing of anyone carrying out a caring role, whether paid or voluntary.  I’m thinking of things like my carers having to lift my very heavy electric wheelchair up a step to get it into my old flat.  There was no ability to add a ramp and they could easily have hurt themselves doing it.

Not having accessible homes also means disabled people may be unable to leave to go to work.  If I hadn’t had care for other reasons, I wouldn’t have been able to leave my flat on my own and wouldn’t have been able to go to work.

But even if you have a home that you can get into, you likely need additional adaptations and right now, there can be a wait of over two years for help with that…

“67% of councils report disabled people not having crucial home adaptations completed within the 12-month deadline. 23% of councils report disabled people waiting over two years for completion of works.”
Leonard Cheshire


There are of course many other issues affecting disabled people in Britain today that I haven’t touched done; hate crime, intersectionality with race and gender, public transport, access to education and so on.  I will be revisiting the additional issues that face disabled women in another post but in the meantime, here are some useful links:

Office of National Statistics – Being disabled in 2019 disability facts and figures

Joseph Rowntree Foundation – Disabled People

Equality and Human Rights – Being disabled in Britain

Leonard Cheshire – Poverty, Social Care and Disability

The pros and cons of being my carer

Recently I was thinking about the role of my carers and the pros and cons of their jobs and having spoken with them, the pros and cons weren’t necessarily the obvious ones.

There are some very obvious pros, for example going to the theatre with me, going on days out, going on holiday…  All of these things are something I need assistance with and therefore a carer gets paid to go with me.  When we aren’t out and about, we’re normally at home watching netflix or youtube and I choose what to watch based on who’s on shift with me.  I’m great friends with my care team and that has to be a pro… at least I hope so!

When it comes to the cons, you might expect somebody to say emptying the commode, showering me or washing my period pants.  You might think it’s hard having someone ask you to do something every few minutes or having to anticipate someone’s needs.  To be a third wheel at times or having to go to things and places that you don’t want to.

But the reality is, having spoken to my carers, the things that they see as cons are dealing with spiders and coping with my nightmare neighbours.  Starting work at 8.30 was also mentioned with the caveat that this would also be the case for most jobs so isn’t care specific!  This morning I did not want to wake up, but I have to get up by a certain point to have my medication, and my carer hated having to interrupt my dreams.  In a similar vein, it’s hard for them to see me anguish over asking for help on bad days for things I can cope with on better days, and watching me suffer with pain when there’s nothing else that can be done. 

Essentially, the harder bits of my care are because my team are empathetic, kind and caring people who find it hard to see another person suffering.  

Of course, this isn’t the reality for many carers who are overworked, underpaid and expected to see numerous clients in one day.  I am lucky in that I have a small care team who work with one or two clients and so we are able to build that relationship which is important.

Being washed by carers

One of the most intimate parts of my care is being washed by another person.  Once my hand splints come off, I struggle to use my hands and can’t open bottles or hold a sponge without causing further hand pain.  It is because of this that my carers wash me, my entire body, yes, even there.  My entire body.

What does this mean for a 32 year old?  Well, today it’s normal.  I started having carers wash me when I was 28 and the flat I lived in wasn’t accessible.  We were having to sponge wash me at the sink.  I would sit in my dressing gown and we’d slowly work through my body.  It was cold and tiring and that was my overwhelming feelings about the matter.  They over-rode any concerns about privacy and dignity and nakedness.

But, it was important to me that it wasn’t just anyone who was washing me.  I insisted on regular carers than I could build a relationship with and there were particular carers who I chose to wash me because we had a better rapport.  One of my carers was very nervy and anxious and the idea of having her wash me wasn’t one I was ok with.  Another was incompetent and whilst that’s not great when she’s brushing my hair, it’s something else when she’s taking a sponge to my boobs…

Later I would move into a flat with a shower and whilst it was much better than sponge washes, it did change things slightly.  I was sitting in front of a fully dressed carer whilst I was completely and utterly naked.  And yet, I was ok with this, so long as I could chose the carer.  We got into routines and it was a bit like a strange dance; I start by offering my arm out to be washed, then I turn and my other arm gets washed.  Then my legs, then my back, then my tummy and so on.

Today, having carers shower me is run of the mill, it’s what we do, it’s how I get clean.  Still though, the quality of the shower is down to how good my relationship with my carer is.  I had a carer last year who I didn’t get on with, who didn’t listen and who didn’t treat me with the respect she should have.  I didn’t like having a shower with her.  She got shampoo and shower gel in places that didn’t need it – eyes, ears etc.  She didn’t like to talk whilst showering me.  She stood as far away from me as she could whilst also doing the job.  She tried to do things her own way which means the strange shower dance I have spent years perfecting didn’t work.  It was awkward and clumsy and disconnected and I felt like an object.

Similarly, carers who are prudish or standoffish make for an awkward atmosphere.  They see you naked and whilst I don’t expect to see my carers naked, I do expect to feel like I know something of the carer, outside their job.  That they have a couple of kids or a dog is enough.  That acknowledgement that we are both people.

I am lucky and I am now with a great care agency who focus on compatibility which in turn means showers are easier.  But the idea of being with an agency that sends out different people every day horrifies me.  To be showered by someone who has just met you, who doesn’t know you as a person, who doesn’t know what you can and can’t do and what might be risky or not.  It doesn’t happen in any other relationship.  The very least I would expect is to have met the person who is seeing me naked, in a physically vulnerable situation.  To have a care manager who acknowledges that I am a person with preferences and not an object.  It is not like taking a car to a car wash.  There needs to be dignity and rapport, understanding and empathy.

The vulnerability inherent in being showered by a carer must also be acknowledged:

“One person, strong and able, stands above and over another who is frail and physically vulnerable, forced to rely on their strength and goodwill… Being naked in the face of someone who is not, contains a powerful dynamic of domination and vulnerability, and it is often used in situations of interrogation and torture as a means of subjugating the individual.”
Julia Twigg

If you are washing, or being washed, by another person:

  • make sure the room is warm enough – being showered by another person is a lot colder than showering yourself
  • check the temperature of the water and make sure to either keep checking it or that the person being washed feels comfortable enough to speak up
  • non slip mats for safety
  • a shower seat can make things easier and safer
  • if the person being washed can do bits of it, let them; if they can do lots of it, they may want you to wait outside within shouting distance
  • if you’re being washed, having nice products can make it feel a little nicer
  • showering can be a good time to check for sores and rashes and bruises and such things
  • check what side of the sponge the person wants using – I want rough side for legs and soft side for top half of my body
  • having a shower routine can make things easier, less tiring and quicker
  • once showered, my carers wrap my towelling dressing gown around me and I dry that way
  • but most importantly of all, communicate, and remember that you’re helping a person, you aren’t washing a car.

Why we should value carers

On twitter the other night, I saw a thread.  I was going to just embed the tweets but wordpress isn’t cooperating with that… It does promise me a new editor is coming soon… Personally I think they’re trying to frustrate me into buying the black friday offer but I shall persevere!

Laura, @laurapdtp, posted the following:

a few days ago, I saw somebody use the hashtag in relation to the new article [pictured] below:

Now while I’m sure this person didn’t mean any harm, it got me thinking about the negativity carer workers get if the complain about poor treatment or move out of care work. For example when I’ve spoken out about poor treatment I’ve been called a “troublemaker” or if I’ve refused to do 3 18 hr shifts on the trot I “clearly don’t care enough about service users” or I’m “selfish”.

There seems to be this expectation that in order to be a “good” carer you have to sacrifice your own life/time/money/health. A lot of companies play on carer workers guilt and it fucking pisses me right off. I saved a clients life when they stopped breathing during a seizure, but because I don’t want to do a 36 hr shift with no sleep & I want to be paid [National Minimum Wage] for all time spent at work I’m a “bad” carer? Fuck right off.

Choosing to leave a job which doesn’t pay enough/pushes you to breaking point/ any other reason & speaking up about poor treatment DOES NOT make anyone a bad carer, nor does putting up with poor treatment, and pushing yourself to the point of exhaustion make you a “good” carer. What makes a good carer is your intent, the effort you put in, making sure your client is happy, putting a smile on their face, supporting them wherever you can. It’s so damaging to the industry as a whole for staff to keep taking poor wages/ treatment and being told that’s what makes a “good” carer. If we allow it to continue, then it will and in the end both ourselves & clients suffer. Yes at times you will need to go above & beyond in your job, but wanting a quality of life and caring for yourself too is allowed & under NO circumstances does it make you a bad carer. This needs to stop.

& I’ve noticed some fellow carers buying into this too. “Well I did this many hours & I did this, blah blah I’m a Better/ more dedicated carer”. Well good for you but no you’re not everyone is different. A bad carer is somebody who abuses clients, steals from them, doesn’t treat them with respect/ dignity etc. (& these people shouldn’t even be in care anyway) not somebody who doesn’t want to do another 24 hour shift because they’re so exhausted they can barely keep their eyes open, or somebody who whistle blow, or somebody who finally had to leave their care job because it was too much.

Stop competing and start supporting each other. Care is not A competition. & companies who put this kind of pressure on their staff should be ashamed! Rant over, happy Monday.  

Later followed by this:

For f***s sake stop referring to care workers as low skilled! I’m trained in epilepsy, medication, trachy & vent, peg feeds, spinal injury & treatment, first aid to name a few. Calling us “low skilled” is just a sneaky way to justify not paying National Minimum Wage.

(I have tidied up the format because tweets don’t work so well in a long paragraph and changed a couple of spelling mistakes which Laura acknowledged.)

After retweeting the entire thread, I threw out a few of my own (late night) thoughts on the matter and made a note to elaborate in a blog post.

I want my carers rested before handling my meds. I want my carers to have a high quality of life because it increases the quality of my care and my relationship with my carer. I want my carers in the job because they want to be, not cos jobcentre deems it low skilled and thinks everyone can do it cos there’s no entry qualifications. Far from it, only select people make good carers, I’ve had many bad ones. Both bad at the job and bad cos they were in it for the wrong reasons.

If care work was more highly valued and thus better paid, some of the best carers I’ve had would be able to afford to work in care long term, not just a short term option until they find something better paid or need to find something better paid.

I also linked to a few previous blog posts:

Whilst the how to be a carer posts are humorous, they are based entirely on experiences I have had with carers and they do a great job of highlighting that not everyone is suitable for care work. In fact, in my experience, very few people are.

I agree that there shouldn’t be any entry qualifications for carers but that doesn’t mean it’s low skilled.  Each client is different, with different needs and different ways of doing things and that can only come with personalised training.  And as you get to know and work with new clients, you’ll come across certain needs which do require a qualification or specialised training such as administering medication through a peg.  But I strongly feel that learning these as you need to is more helpful than expecting carers to know how to do them before ever meeting a client.

I’m also very keen to ensure that my carers aren’t taken advantage of by their managers.  With my old care company, it was down to the carers to tell give me my care rota, and thus the bad news that once again I wasn’t getting what I was entitled to.  It was also down to them to tell me when my hours changed and when my care was cancelled and whilst I knew they were just the messenger, you end up in an awkward situation.  The client is frustrated or in some cases actually in a dangerous position because of the changes eg missing medication and the only person to express it to at that moment is the carer.  The carer also knows that this is a potentially dangerous situation and then feels awful and often guilty and I have had carers offer to do things unpaid because of that.  Or to do even more overtime than they’re already doing.  Both of which are potentially unsafe.  I was very clear that my carers shouldn’t be guilted into doing things but the practice is common place.  After months of being taken advantage of in this way, one of my carers did start putting her foot down but she should never have been in that position in the first place.

As I said earlier, I want my carers to have their own lives.  It makes them healthier, happier and better rested individuals who have more to talk about because their life is more than just their job.  Yes, some people go into care because they want to do the job for the right reasons but that doesn’t mean they shouldn’t get paid properly for it.

Poor wages also mean that a lot of people can’t continue to work in care, even if they want to.  At some point their life changes, maybe children arrive and household spending increases.  Unless that person wants to progress to a team leader or management role, they either have to struggle with low wages, or find another job.

Carers make a huge difference to people’s lives, they reduce hospitalisations and help to maintain people’s health.  Without them, I don’t think the country would cope.  Valuing care workers means wages that reflect the roles they carry out and protecting their non work lives so they can continue to give all they have.

At times you will need to go above & beyond in your job, but wanting a quality of life and caring for yourself too is allowed & under NO circumstances does it make you a bad carer.

How to be a carer, part three

If you’ve read the previous posts, or lessons, you might be aware that its important to keep in mind how much better you are than the client.  You are wiser, more intelligent, more able and just overall a much greater human being, after all, you contribute to society selflessly every day.

Golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

Keeping that in mind, you must also be ready to step in with advice at every chance, preferably before being asked.  It doesn’t matter that you don’t know anything about the client’s condition and that you haven’t bothered to learn anything, you are the better human here so your advice should be taken as gospel.  This is especially true when treating symptoms and administering medication.  Whilst this might have been covered during training, you should forget everything you learnt.  Ideally, don’t pay attention to the training and if any of it does seep in, do your best to erase it.

If the client asks you to do something you don’t want to, just don’t do it.  It is that simple.  Don’t refuse, just make out that you have done it or don’t mention it again.  Related to this, what the client does that day should be dictated by you.  If you want to go out for coffee, that’s absolutely fine, just tell them over and over again that its the perfect day for a coffee or other activity that you want to do.

When the client is busy doing things, it’s best to either a) interrupt with pointless questions or b) sit and stare at them.  This is great because communication and spending time together are important in relationship building.

Expect the client to micromanage you.  This way you do the bare minimum work and if anything doesn’t get done, or doesn’t get done well enough, it’s not your fault, it’s the clients.

That said, you should use your initiative when it comes to things like medication.  Remember that golden rule… The client is stupid and they don’t know what medication they really need…

During showers, the priority is to keep yourself dry, don’t worry too much about actually washing the client.

Argue with everything the client says.  The sky is not blue, it’s shades of white and grey.  This is really good as it keeps the client’s mind sharp.

Tell the client that you don’t want to be a carer. It makes them feel extra special and really grateful that you’re doing it for them.

Follow these simple guidelines and you’re well on your way to becoming a fantastic carer.  All your friends and family will admire you for helping those less fortunate people and heap praise upon you for how you suffer for others.

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.