Last year, I learnt a lot about stress. The hard way. I am now almost 12 months into recovery from ‘burnout’. Not an official medical condition in its own right, but the symptoms most definitely are, with anxiety and depression sitting at the helm.
As I sat across the desk from the doctor in occupational health, the list of ‘risk factors’ for work-related stress that he read out was like listening to my own job description. As it actually was. Not the official version sitting somewhere in an HR file.
But as I listened, I realised that the very same risks at work that had tipped over my ‘stress’ into ‘mental health problems’, were lying in wait for me at home too.
Nowhere to rest, recover, or top up the tank.
Being a parent to a disabled child is one of the most rewarding experiences of my life. He gives nothing but love and joy. But as parent carers the systems we have to negotiate and the situations we have to manage can be devastating for our mental health.
While employers have a legal duty of care to protect their employees from the damaging effects of unmanageable work-related stress, there is no similar protection for carers.
There is no big red button to press when stress becomes overwhelming. No solution offered, bar anti-depressants from the GP. The number of parent carers on long-term doses of anti-depressants must be staggering.
But anti-depressants should not be the answer to a system that all too often is the primary source of stress for parent carers. Amongst my own parent-caring peers, major life trauma aside, it is the systems delivering health, social care and education, not the role of caring itself, that are the cause of the most tears, frustration and often desperation.
Being technical and academic for a moment, there are six clear areas of risk for mental health damage through stress that the Health & Safety Executive has identified which employers must mitigate, or invite a law suit. Every one of them with red flags all over the place for parent carers too.
“Not able to cope with the demands of their work”
Caring is a 24/7 job. A physically, emotionally and mentally tough job. One that comes with a daily waterfall of paperwork and a team of dozens of people to manage, chase, meet and feed back to. Even the ‘short break’ that is supposed to come with a few hours a week of local authority funded carer time (for those who have fought for it), comes with the requirement to set up as an employer, recruit a carer, organise their life support & epilepsy training, hire and manage an accountant, report monthly to the local authority with timesheets, expenses and bank account balances.
Then there is the deep frustration of living your life amongst an NHS referral and appointments system that is not set up to adequately cope with long term or complex conditions. Or even to share information across trusts. Where errors are made, reports have to be chased and often corrected. Where appointments you have had to chase for months to get are cancelled by the hospital and then you are sent a rude letter because you ‘Did Not Attend’. Black mark to us… Back to the bottom of the snakes and ladders referral system we go.
“Unable to control the way they do their work”
Unwieldy bureaucracy does not lend itself well to any feeling of control. There is no sensible grouping of appointments and often little ability to dictate when and where they happen. Decisions about critical aspects of life like where your child will go to school, or where they are cared for when not at home are made by panels of people you have never met, and who have never met your child either.
We live our caring role atop a perpetual fear merry-go-round that we cannot control, of social care packages being reviewed every six months against a suffocating backdrop of ever increasing local authority cuts. We always have to be on our game, anticipating the next threat of a reduction or removal of support on which our child’s wellbeing and our ability to cope depends.
“Don’t receive enough information and support”
Bamboozling reports from medical professionals and social workers. Boxes filled but no real answers given. If you don’t fit the common mould, or a particular pathway, there is a cavernous Grand Canyon size lack of relevant information and support if you are the parent of a child with a disability or complex condition. Local authorities and the NHS are champions at over-producing reams of information <see ‘Family Information Service’>, but finding the relevant and useful stuff, well, good luck.
“Are having trouble with relationships at work, or are being bullied”
All too often relationships between parent carers and the local authority or NHS staff who are supposed to support us can be extremely testing. When relationships are good, they are great. When they are bad, they are incredibly damaging. I have witnessed friends of mine being bullied by social workers and left floundering in the most impossible of circumstances. To the point of the most severe impact on their mental health and that of their families.
“Don’t fully understand their roles and responsibilities”
There is no life manual for being a parent carer but there is an endless stream of people who come in to your life with their own views on what your job is. I have dined out too many times on my own personal anecdote of the early support worker who quizzed me on the exact number of minutes of physio I was doing with my son daily in the same sentence as telling me that ‘my decision to work was a lifestyle choice’.
“Are not engaged when a business is undergoing change”
The zig-zag boomerang rollercoaster of change in every aspect of health and social care impacts us constantly. When you interact with many multiple services week in week out, it can leave you feeling lost, spinning, concussed.
Many of the parent carers I know do their damnedest to keep on top of service change, attend public meetings, respond to consultations and help progress in the system as much as we can. But it’s not always easy and all too often we have to fight for it. Local authorities will say they have ‘engaged’ if they send a poster about a proposed service change to their local parent carer forum. The same forums that don’t promote themselves and that most parent carers aren’t members of.
When my health was compromised by a job that ticked all six of these risk factors, I left. But the jobs that come with being a parent carer aren’t jobs you can just walk away from. We cannot choose to engage with a different local authority or a different NHS. Because there is no choice. It’s what there is. We are bound to them, Hotel California style. There is no way out.
And while I can do my utmost to encourage and support change, and to highlight and celebrate good practice when I see it, I am genuinely fearful for both my own mental health and that of every parent carer in the country who has to accept these risk factors into their lives probably forever.
Who is looking out for the carers? Who is accountable when a parent is exposed to these risks not by an employer, but by the health and social care system that is supposed to support us?
Where is the big red flag that highlights somewhere in the system that a parent carer is at risk of being shunted face first into overwhelm? Until they show up at the GP with symptoms of anxiety and depression?
Because if you can keep the carers going, you can keep the cared-for going too.