I’ve been working in Belgium this week. When I got back to the hotel this evening after a busy day I glanced at my personal emails, and I saw one that totally threw me.
It was from the care agency I use for my essential and personal care requirements, saying:
“There are some updates in relation to the allocation of your weekend care. Please note MiHomecare no longer have the capacity to cover your weekend service as of 09/11/2019 and you will need to make alternative arrangements.”
This ends an arrangement that’s been consistently in place for over eight years – with just two days notice! While I knew they’d been having some issues with staffing, this was out of the blue and it left me feeling stunned, vulnerable and completely expendable.
I’m not usually able to look at my personal emails while I’m at work, and I’ve repeatedly explained to the agency that: “Calling is preferable to email in the day or for last minute/urgent things as I won’t always see my email in time.” This feels like in order to avoid an awkward conversation they sent an email ignoring my communication preferences.
In addition to the worry of being left without appropriate care, the way this decision was communicated left me feeling upset and really let down.
My mind’s racing through all the possible ways I can manage without care this weekend. Unless I can find a solution, I won’t be able to fully empty my bladder safely between 9am on Saturday morning and 7pm on Sunday night – that’s 34 hours without the use of a catheter. Do I stop drinking? Go to the nearest A&E? Or risk injury trying to catheterise by myself?
Back in 2011 it felt as though my life was falling apart: my tics were having a big impact on my mobility – I was getting frequent injuries from falls, and I was experiencing regular seizure-like episodes of intense tics that kept me stuck on the floor for hours at a time. My work, independence and wellbeing felt extremely precarious and I was increasingly reliant on my friends and family for my basic day-to-day requirements to be clean, fed and safe.
At work I had the help of a support worker funded by Access To Work but at home I didn’t have anyone. I was also living in inappropriate housing, up six flights of stairs. On a Friday evening my support worker would take me upstairs and, unless I was able to find a friend who could help me, I wouldn’t be able to get out again until Monday morning.
I’d worked in social care professionally for years but it took me ages to recognise that I needed help myself, and make that first phone call to my local authority’s disabled adults team. Luckily I was assessed very quickly by ‘London’s Best Social Worker’ as Leftwing Idiot dubbed her. She was incredible and put an emergency package of support in place straight away. She arranged for an agency to send carers to help me wash and get ready for work in the morning, to help me have dinner, to get ready for bed in the evening, and to help me stay safe and be able to access my community at the weekend.
My support requirements have continued to change and I’m lucky to have a care package that meets my needs well. This is now managed through direct payments which gives me control over who provides my support. For the majority of this I choose to employ my support workers directly, but this means if someone is ill or needs to cancel at short notice I can be left in a tricky situation. To help manage this, and to ensure that the most crucial and personal elements of my care are always covered, I’ve continued to use the agency I was first set up with.
In 2013 the local care agency I’d been with since the start were taken over by MiHomecare, a massive company operating all over the country.
Last year they lost their contract with my local authority, but because I have direct payments and because the carers I had were lovely and very regular, I stayed with MiHomecare. They assured me that they could still provide the services I required. I did check with a social worker about other agencies but was told that most services were stretched, so it seemed sensible to leave things as they were.
Over the last year, though, the support has been increasingly haphazard. My regular agency carers have needed planned medical treatment so have been off work, and the agency has found it difficult to provide consistent cover in their absence. In the last two months they’ve cancelled visits at short notice or supplied unsuitable carers. In spite of this I’ve stuck with them and tried to be as flexible as possible. As recently as last week they were assuring me that they were recruiting new workers.
As soon as I could today, I called Social Services to discuss how I might manage in the short and longer term. Some of the support workers I employ directly are men and so the agency was supposed to ensure that there are always women available to help me with my personal care requirements – in particular washing and using a catheter. Not being able to keep myself clean or manage my toileting can lead to infections and have a direct impact on my health.
On MiHomecare’s website it says:
“You need a company that you can rely on, and people who are compassionate, honest and trustworthy.”
That is exactly what I need, but that’s not what I am getting.
And it’s clear from reports today that I’m not alone. Edith Monk, another disabled woman, is in a similar situation with her care agency. They’ve also withdrawn her care at short notice, and at lunchtime today she still didn’t know if she’d have support this evening. There are also many young disabled people stuck in hospitals or in nursing homes which aren’t equipped to meet their medical or social requirements.
This isn’t simply about money – I have the funding in place to pay for the services I need. It’s that the carers simply aren’t there for me to engage. This seems to be the case for Edith too. We urgently need to understand the factors at play within the social care crisis so that meaningful action can be taken.
In the last decade of Conservative-led governments, many vital services have been handed over to the private sector. The crisis in social care demonstrates the dangers of entrusting our societal safety-net and health services to run-for-profit companies. The incentive for commercial businesses will always be to cherry-pick the clients or services where they can make the most for doing the least. This leaves gaping holes that vulnerable people will fall through.
Yesterday campaigning began for the UK’s snap General Election. The Independent reported that the Conservative party are still trying to decide how they’ll address the care crisis that they created. But social care policy is too important to be decided on the hoof based on what politicians think will score well with their target voters.
Labour’s social care polices look promising, but so far they’ve mainly focused on care for those over sixty five. Social care is far from just an issue of old age. Half the money spent on social care is on younger disabled adults like me.
We need a social care system that is reliable, safe and caring.