Home Care - the realities, a patient's perspective

By Zak Hughes

“I was born with a rare muscle condition called x-linked myotubular myopathy, which affects my safe breathing, swallowing function and my ability to move freely. For this reason I have relied substantially on others to meet my care needs – for the first 16 years of my life, this was mostly my parents. Since becoming an adult, I have almost exclusively had my care support provided by hired personal assistants.

It is my view that parents shouldn’t have to sacrifice their entire lives to act as their child’s sole provider of nursing care when external support can and needs to be offered. Children with complex healthcare needs shouldn’t have to view their parents as their nurses.

Often, here in the UK, the level of care support a family can expect is dependant on where in the country they live. Before I moved to another county, I was not considered to have any need to justify home care support from someone, other than my parents. The level of care support provided to an individual can mean the difference between living at home and living in an institution, when it isn’t necessary. It can mean the difference between a poor quality of care and a good one; or, for the person involved, their parents and other family members, it can accommodate a normal life. In extreme cases, it can mean the difference between life and death for someone with complex healthcare needs.

Often the damage to individuals and to families is subtle, and measures will only be put in place when obvious cracks begin to show – a parent experiencing compassion fatigue, a mental breakdown, or even the child themselves needing hospitalisation because the person tasked with caring for them is too exhausted to be able to do so properly. A good example of this can be found in a case of a child here in the UK living with MTM. They have very complex healthcare requirements, and live in a single parent household. The local care funding provider is reluctant to offer a significant level of care cover as the child’s parent – in the funding provider’s view – is capable of meeting a large proportion of the child’s needs personally. They view access to care support as a luxury, not a fundamental necessity. The parent has been criticised for wanting to be in employment, and to spend some leisure time with friends at weekends – and the funding providers will not provide a level of care hours that helps to facilitate this. What a parent of a child without complex needs would do is call a babysitter – probably the teenage child of a neighbour who offers child minding services after school for £10 an hour. That, of course, wouldn’t work here, as the parent would need to hire someone of adequate training – someone that knows the child’s complex needs well enough, someone who is competency trained in nursing procedures so that the parent isn’t spending their night out worrying about whether their child has been given enough nasopharyngeal suctioning to prevent them from choking on their secretions. To hire someone like this would cost hundreds, sometimes thousands, and in reality means a regular night out is impossible. The parent lives their life around their child, far more so than a parent of a non-disabled child – ever present for their every breath. Those who criticise parents asking for help often come from the privileged position of not having a child with complex care needs, and are unable or unwilling to understand the burnout that can come with that.

For a parent of a child with complex care needs, their entire home life – when they don’t have adequate care support – is a full-time job. No one would ever expect a professional to work 24/7 without a break and no promise of relief for an indefinite period of time. In fact, there is an EU directive that employees must sign a waiver form if they work more than 48 hours a week, and laws that night carers should have access to medical appointments and encouraged not to work more than 48 hours a week. We do this because we know that overwork leads to exhaustion, and exhaustion leads to, at best, burnout – and at worst, disaster. Imagine a lorry driver working 168 hours a week – the cause of their inevitable crash would be easy to point to; and yet when when the state funders consider this in terms of a parent’s role as a carer, this reality is ignored and can – and does – lead to worse outcomes. In this analogy, if the driver doesn’t work, and they are threatened with termination – so they have little choice but to work dangerous hours – are they blamed when they crash? For parents of children with complex care needs, they are called ‘irresponsible’ if they don’t comply with the decisions of the state to take on a lion’s share of care, even if they know the health of themselves and their child are at risk. If a lorry driver was forced to work such shifts as parents of children with complex care needs, the ensuing disaster would rightfully be viewed as the fault of those who forced the driver into that position.

The analogy of the exhausted lorry driver may seem extreme – but it inescapably applies to healthcare as well. We know from extensive research that a nurse or doctor’s efficacy declines rapidly once tiredness sets in – evidenced more recently in the intensive workload nurses and doctors faced and continue to face in the COVID pandemic. A poll donated by Census Wide on behalf of Visiba Care (a platform for online consultations) revealed the toll the pandemic has taken on NHS employees – showing that 45% of doctors, nurses and allied healthcare professionals were considering leaving their organisation due to a poor work/life balance. For many parents, a significant proportion of home life is spent nursing their child, with few breaks (and far too often, no breaks) for children with a severe form of x-linked myotubular myopathy (XLMTM), and the knowledge that if they fall asleep from exhaustion it could have fatal consequences for their child. Even if the worst doesn’t happen, the sheer mental and physical exhaustion that comes from years of hyper-vigilance is extremely likely to cause adverse effects – from bouts of compassion fatigue to full on psychological breakdowns. All of these are detrimental to everyone involved: parents, children, and state care providers that are forced to clean up a calamitous situation of their own making. Local Authorities create dangerous situations through a lack of support then chastise the parents because the situation is a dangerous one. They wait too long to act when offering support before a disaster happens is a far easier solution, and is better for everyone involved.

This reality – of parents under strain and children put at risk by this strain – often lasts until the child turns 18 when many, now deemed to be ‘independent adults’, are offered the 24/7 support that they should’ve had since birth. Or it lasts until the parent breaks down and the child is avoidably put at risk. Or it lasts until the very worst happens, as it far too frequently does.

This view of care support as a luxury works for no one. Not for the parent – who suffers exhaustion beyond external understanding; not for the state – who have to perform triage when things do go wrong; but, most importantly – not for the child, who will have been robbed of a normal relationship with their parents.

My parents were my nurses for almost all of my childhood, and some of my adulthood. It’s taken two things for us both to salvage a parent-child relationship from what was previously a nurse-patient one: it’s taken time, almost a decade of adulthood; and it’s taken a 24/7 care package. With my basic health and personal care needs by hired employees, I’ve been able to form a more natural relationship with my parents than the one that was forced upon us all. They’ve managed to rediscover their lives outside of worrying whether I was properly taken care of, and I am able to be my own person separate from relying on them for my basic needs – as other adults can. For the first time in my life I’ve been able to have control over my life – something that isn’t possible when relying on parents for basic physical care – no matter how hard they try. My parents did their absolute best to care for me – and with little training – yet they were still my parents, and my teenage years lacked much of the social spontaneity enjoyed by others, as my parents were the conduits through which I functioned and interacted with the wider world. My childhood, and my relationship with my parents, was wholly different to that of my non-disabled peers with theirs. As the social model of disability reminds us, this is far more because of a lack of proper access to social care – it is not an intrinsic reality of the disabled experience. We know care support is vital – that it helps in more ways than just allowing parents to be parents and children to be children (as if that wasn’t enough) – yet it is viewed with ambivalence: as some negotiable luxury.

Access to high-level care support is vital – necessary – for disabled people to achieve the autonomy and self-determination afforded to others by birth. This is a human right, a non-negotiable, fundamental part of the human experience, and it is a modern day failure of our social care systems to deny that right to disabled people. If you have any power to influence an individual’s access to social care, we urge you to consider pushing for better support.”

Watch the video of Zak talking about home care here – at the TREAT NMD Congenital Myopathy Masterclass in February 2022.