Tonight's special edition of Panorama is an investigation into the provision of care services by private companies 'caring' for those in their own homes. Although the print article makes no mention of it, home care is not just for elderly people but is provided/rationed for any person needing assistance in their own homes who meet the criteria their local authority set.
I have personally experienced home care provided by one of the companies Panorama investigates. I've not seen the show in advance but the reports so far fit with my experiences of home care. I was initially granted home care to help with basic housework, laundry and some personal care. I was never able to receive personal care from this company as the social worker forgot to write down on the referral that it was also for personal care and so the company would not insure the carer to provide personal care. The company did provide one regular carer which I later found to be quite unusual. The carer like so many are was lovely. She would have been happy to provide personal care even without the insurance. Lovely though she was, she was also utterly burned out as she was the sole carer for her elderly parents in addition to working full time for minimum wage.
Personal care typically means assistance with personal hygiene needs. In my case I needed someone to be around to make sure I got in and out of the bath safely, to check the temperature of the bath water (I can't feel heat properly!) and to wash my hair. These are fairly typical personal care needs for an elderly person starting to become a little frail but can cover those people who need assistance with a hoist, or who are unable to wash themselves at all. Between myself and the carer we agreed that it was acceptable for her to wash my hair without insurance but not for her to even be in my home when I needed to get in and out of the bath as if I fell she would be liable regardless of whether she was assisting me.
My care needs increased at that time, and a care package which had always been insufficient became unworkable. By that point I was frightened of the social workers who'd consistently failed to do any of the things they'd promised to do and I only managed to set up a review after threatening to sue the local authority for negligence. I'd dropped some cooking oil on the kitchen floor and as carer's are carers not cleaners it had turned the kitchen into a skid pan which the social worker felt could be left in that situation until whenever they could arrange a review. I felt that I didn't need a broken hip, and nor should the NHS have to fund the consequences of such injuries.
I was assigned a different social worker who set up a care package split between using Direct Payments to fund someone to do proper cleaning work and for a care company to provide personal care, cleaning such as washing up and ironing, help with food preparation and help with medication as well as any shopping I might need. For that amount of assistance an hour a day was considered sufficient by social services but only on weekdays. I could have opted to have all the hours on direct payments but as an employer it is very difficult to find anyone who can work legally for less than 16 hours a week, let alone someone you'd be comfortable helping you when you're naked and vulnerable. It was only possible for me to arrange a care package quickly because I'd phoned around all the local care companies to see which had the availability to provide that type of package at the correct times of day. The care company then only required a fax from social services to confirm which could be done by the duty social worker. Despite all that social services had to be threatened with legal action to make them act within an acceptable time frame.
The company I'd found to provide my personal care had promised they would provide continuity of care with a maximum of two different carers. It was immediately obvious that was never going to be the case and throughout the entire time the company provided me with carers I had an ongoing battle with them about how many different carers it was acceptable to send out. The care companies claim it is incredibly difficult to arrange regular carers as they have to organise the rotas in advance and in the morning everyone wants care around the same time. It made less sense to me then that it does now, but I was vulnerable and quickly realised it didn't really matter what I said I would be given what I was given.
The carer's varied from those who deserve every award going through to those who, putting it charitably should be undergoing criminal investigations for their 'caring' behaviour. Very little gets said about good carer, but when it works best it is because a relationship builds up between carer and care recipient. The care companies particularly dislike those relationships though, as inevitably it leads to give and take between carer and client, and good carers often provide additional care in their own time which is forbidden regardless of financial recompense. That is one reason the companies dislike providing regular carers. I'm still very close to one of the carers I met during that time. She was my most regular carer and were she in charge of care provision and standards the whole industry would be turned around! Although I no longer receive any kind of care package from social services I still see this particular carer, who would also happily provide care to me if I asked. I couldn't say enough wonderful things about the carers who are like this particular lady, so I'll simply say that paying people like her minimum wage is disgraceful.
Care companies tend to have a very high staff turnover, partly because the pay is so poor, partly because the conditions are so poor, but mainly because most of the people entering the care industry are so poorly suited to it. They soon discover that it's easier to earn the same money elsewhere for far less hassle and so they leave. I was told by several carers that the care company was charging the carer's to do their required NVQ training and deducting the money from their wage packets. They reported sums up to £50-60 being removed from their monthly wages for these required courses. The care companies are supposed to fund the cost but many deduct it from wages to stop people leaving halfway through the course. Should the course be completed the carer will have the money returned to them, but many had a battle to get the money back. Many of the training courses are of low quality and poorly delivered so people on minimum wage can be understandably reluctant to have to pay for such training.
One of the issues mentioned in tonight's programme is medication. I don't need any assistance to take my medication (although strictly speaking someone should be there to prevent my more extreme choking bouts) but I did and still do require assistance to put the medication into a weekly pill box. This was a task which the social worker had specified I be given assistance for and which went well until the care company sent a supervisor out who insisted they did not dispense medication and stopped the carer's assisting me taking the tablets from their bottles or blister packs so that I could put them into the weekly pill box. That same supervisor later insisted on several occasions that the carer's were not to assist me in and out of the bath and that if I should fall they were to cover me up with a towel and wait for the paramedics. Most of the carer's did insist that was rubbish and of course they would help, but the predictable consequence of all this was that I ended up reluctant to let any carer in the bathroom whilst I was bathing.
I was incredibly isolated at the time I was receiving care, so much so that there were times it would be 3 weeks or more between the times I'd see anyone who wasn't a carer and on many days the carer would be the only person I'd see or speak to. During weeks that the care company were sending multiple different carers to me, often carers I wouldn't have previously met I found myself becoming quite confused and disorientated. There is something particularly unpleasant about having to open your door to a new stranger every day, a stranger who is there to help with the most personal of issues. I still cannot bear to imagine how terrible that must be for elderly people who are already confused.
Sending new carers all the time is not just a problem for the client, it also makes life difficult for the carers who are rarely given enough information about their clients. On one memorable occasion I opened my door to a 'carer' who shoved me aside as she marched past me demanding to know where 'she' was. The woman was expecting an elderly person and was half way up my stairs before I managed to get her to listen to me enough to understand she was there to provide care for me, not the grandmother she'd gone searching for.
I could tell you about the pregnant carer who didn't do any work because she was pregnant and said she couldn't. But she could manage to smoke all my cigarettes every day. Or I could tell you about the day I realised one carer had been changing my sheets every week without mentioning the fact that my cat had urinated on my bed. What would have been a relatively simple issue to deal with by cleaning the mattress (and not a job I would ever expect any of the carers to do) ended up with my having to replace the mattress as it was about six months before I discovered the problem despite repeatedly asking the carer in question if she could smell cat urine in the bedroom.
Then there was the time I ended up on the bathroom floor after being sick. Into the toilet, there was no vomit for a carer to have to clean up. I was on the floor for about 20 minutes before the carer got off the phone to her daughter. There was the carer who delighted in pushing really hard on my neck and spine while she was washing my hair and every time laughed about getting soap in my eyes or banging my head against the taps.
As I only received 'care' during the week eventually social services, very grudgingly agreed to fund weekend care. The new care company were due to start the next Saturday but by the Friday afternoon had not been in touch to assess me. The social worker sent a fax cancelling the call (which I did see evidence of) but the care company claimed not to receive it and so sent a carer anyway. The carer arrived after midday although they'd been arranged for something like 9am. I wasn't there as I wasn't expecting them and had taken the cat to the vet. The first I knew of it was when I received a phone call on my mobile mid appointment to find a very angry duty social worker wanting to know where I was. The care company had been on to social services as they could not gain entry to my home and the social worker wanted them let in. I informed both the social worker and the care company that if they made any further attempts to gain access to my home I would be calling the police to report them for breaking and entering. I later arrived home to find multiple messages on my answering machine from a carer who I hadn't met and who had been cancelled by social services telling me they knew I was in there and to answer the door. There were also messages about wanting the correct key code, all in a tone that suggested I was a wayward child playing games with them. The only person who found it funny was the vet!
I was so furious I complained formally to social services. They spent several months investigating the matter then partially upheld the complaint. They claimed the care company were at fault for not cancelling the call and for their attitude, but that social services had done nothing wrong because they had sent the fax. The duty social worker had also apparently done nothing wrong by telling me to let the care company in.
When I eventually lost my whole care package despite the panic I felt at not having any assistance I was so terrified of social services and care companies that I made the decision not to appeal. Fully understanding what the consequences could be for myself I was very clear that I felt safer taking my chances of ending up dead on the floor than I would ever feel dealing with social services.
There are good carers out there and they are unsung, undervalued heroes without whom the country would grind to a halt within 24 hours, but for every good carer there are two bad. If home care workers did not do their jobs (not even including those who care for their loved ones with only the shamefully low carer's allowance to rely on) then almost immediately the NHS would collapse. I suspect it won't be until that happens that we as a society wake up to the value of home care workers and realise the only way to provide decent care is to provide decent funding. Direct Payments, which enable individual's needing assistance to purchase their own care directly are a great improvement, but the entire scheme is horrifyingly under funded and is not suitable for many elderly people. Direct Payments are great for those disabled people who are in a position to manage the demands of employing their own staff, but when you are ill, vulnerable and in need of help the only thing you really care about is having that help provided to you in a respectful and consistent manner.