A controversial heading, but one I have come to the sad conclusion is true. To be very clear, I’m not referring to the people working within the system.
Instead, I’m referring to the catastrophic under-funding of the system. The underfunding that means you literally have a mental health break down, before you are deemed eligible for support. The system that puts the total burden of proof on carers to prove how bad things are, how disabled their child or loved one is.
I suspect it’s this same under-funding that see workloads and stress levels too high for the social workers, contributing to the high staff turnover. I know some wonderful social workers personally, and I see the impact this underfunded system has on them.
As a carer to a child with life long, complex needs, I have spent 10 years ‘battling’ for support. Practical support, emotional support, any support. I face a lifetime of this. From a mental health perspective, I have received one counselling session.
A Mental Load Balancing Act
As a Mum and carer, I spend my time celebrating the tiny developmental steps my daughter has. In fact, truth be told, her developmental growth has been stagnant for a while now, but we still celebrate every smile, every hard earned piece of eye contact, the fact that’s she’s been largely healthy of late and mostly seems incredibly happy. We search for the positive – it’s what you do as a parent.
This is however offset against the gruelling amount of care that my daughter needs. There are many sleepless nights. We’re responsible for all of her personal care. She’s unable to dress herself, wash herself, toilet herself. She cannot feed herself independently. She’s non-verbal. She has no safety awareness. She’s dangerously obsessed with heat sources and open water. She’s has dietary needs. She has overwhelming sensory needs that need to be met all day long. She’s 10 now, and I have been going through the acceptance, that as she approaches puberty and adulthood, her care needs will drastically escalate. This has been the trigger for me to really evaluate how we can ride this out. Identifying the opportunities, the barriers, the support.
It really is an emotional balancing act of the good, the bad and sometimes the ugly.
One of the first things that has hit me squarely in the jaw however, is that in actual fact, the very system in place to support us, is sadly also the biggest risk to my mental health.
How the Care system supports poor mental health
The support system is built entirely around the negative. let me explain;
1. Paperwork and Burden of Proof
Baring in mind what I have said about my daughter’s disabilities, every 4 years I’m still asked to complete a huge pack of forms, to prove her level of disability.
The burden of proof that falls upon carers is gargantuan.
My daughter, will always need full care. I don’t know a single professional who has met her, that would disagree. Yet, I must jump through this hoop over and over again. I would argue, that in some circumstances, such a rigid system is counter productive to support. I appreciate some children and adults with certain disabilities or illnesses may fluctuate, will improve and so on. But, then there are some children and adults that this is highly unlikely. And for these families, the constant ‘proving’ of just how ‘bad’ things are, is soul destroying.
Hours and hours of soul destroying, rip your child apart, paperwork. On one occasion, our support was belittled to a questionnaire, (which reminded me of those teenager magazine quizzes I did back in the day – only this time it mattered!) – mostly A’s, or Mostly B’s, or score between 0-10 you don’t need support, between 11-20, you don’t need support, between 21-30 you don’t need support, score over 100 – oh yes, maybe you do need some support……. We were falling apart, but as the quiz deemed us as ‘coping’, that was fine. WTAF. A quiz, designed to pay out the least – not to actually provide support where support was needed. It was a pretty insulting experience, from our so called support system.
So here’s the pinch. While I spend my time supporting myself to live positively, I am then faced with a system that requires me to list;
- everything my child can’t do,
- every way she is lower functioning than a neuro typical children her age,
- every therapy she receives,
- every illness she has had
- how little she sleeps
- every medical problem
- How many minutes each day, I spend feeding, dressing her, wiping her nose (yes really) and so on
- and much more
After every form filling extravaganza and every meeting with our daughters’ social worker, I feel thoroughly deflated, physically and mentally exhausted.
I can’t afford a mental health break down. What carer can? However, based on previous experience, I know this is what it takes. Indeed, it was my own break down a few years ago, that finally got us access to Respite. After 18 months of begging social care for respite support, as I knew I was going to break – I broke. And then the respite came…..
Now this isn’t because our social worker didn’t care! I felt incredibly sorry for her. She could see we really needed the support. Over and over again, she would take our case to the faceless ‘panel’ , where your very personal stories are shared with people you have never met, and they decide which of today’s sorry cases can have access to their limited funds and get some support.
It is a system that likes to say ‘No‘. From respite, to direct payments to EHCP (Education and Health Care Plans), to school choice, to transport and so on. Even with a daughter with complex needs, we have been to tribunal and appeals. All of which we have won. But at what cost?
There is a genuine worry, about what would happen if I ever said ‘I’m OK’ to my social worker or in fact any other professional in her life. It might just completely undo all the support I had to break down to get! In fact, we lost support once, based on one sentence our SENCO said without realising the impact of it – this one sentence mitigated 3 inches of paperwork stating the opposite. This one sentence saw us at tribunal (which we won).
What if our social worker, senco or other professional tell panel, we’re ‘OK’ at our next review?
This should be considered a success story – that the support package is meeting needs. But….. Might we lose our support to another family who are in despair? After-all isn’t their need greater than ours right now?! Perhaps this is an unfounded fear, but the system is set up in such a way, as to support the ideology. There is sadly limited trust. And if the support is pulled, then the cycle starts over – the rug is pulled, the support is taken, and you’re left to slip into despair, until you can get ‘bad enough‘ to get support again. You can see how this fear, doesn’t support a positive mindset.
This could well be fixed with some simple and open communications – perhaps it’s all unfounded worry…… A belief is just that, at the end of the day – it’s just what I think – it doesn’t make it true. It’s unfortunately how the ‘evidence’ has stacked up thus far…… which compounds feelings of mistrust and fear further.
I don’t want this to be just a negative story. Just a moan about ‘the system’. But I needed to give context.
I want it to be an opportunity to raise awareness. I want to encourage conversations. I want Government and businesses to take notice of Carer’s UK’s manifesto. I want people to step up. I want to work collaboratively. This isn’t a blame game.
I need to take action. It stops me being a victim to my circumstances – I’m owning it. It doesn’t have to be this way.
I want to support myself and other carers to have a voice and to learn how we can best support our own mental health – but we’re only part of the picture. A fully funded welfare system is needed. And this isn’t just about ‘taking’ from the Government. A fully funded social care system, will
- support carers to live positive lives and rejoin the workforce, contributing to the economy
- reduce the burden of mental health and illness on the NHS
- reduce the amount of cared for loved ones, ending up in care homes
- to name a few
Ultimately the current system, isn’t just underfunded, it’s being run in an uneconomical fashion. Fire fighting crisis points, getting carers (hopefully) out of crisis, and then letting them slide back into it. It’s a devastating cycle.
Carers account for 7 million people in the UK. 3 in 5 of us will be a carer at some point, so this really does affect us all – either directly or indirectly. It’s also a huge opportunity. That’s 7 million people reducing the burden on the NHS. And that’s 7 million people with incredible skills and talent, that aren’t necessarily having the opportunity to contribute their full potential to our society, or live their own best life. in fact hundreds of carers leave employment, every single day in the UK. There is a huge opportunity for Businesses to be supporting and nurturing the carers in their organisations, AND accessing and supporting the talent pool of carers that have previously had to leave work.
The ability to stay positive, in a system that is built around the negative, is our biggest challenge.
I have reframed this as an opportunity. An opportunity to raise awareness with our MP, an opportunity to talk to businesses about what they can be doing, and an opportunity for me to identify the hardest parts of caring and find ways to reframe them positively.
The Words in Bold
You may or may not have noticed the words in bold. These are the negative words that are used to describe a carer’s life – daily.
The words we use, shape our thoughts and then our beliefs. If we say our life is overwhelming, negative, and exhausting on a daily basis, then they become our beliefs. And they become what we ‘see’ and the exclusion of any of the good stuff. It’s called neuroplasticity.
“Neuroplasticity is the ‘muscle building’ part of the brain; the things we do (or say!) often we become stronger at, and what we don’t use fades away.”
This is exactly how and why the current system is failing us.
The good news is that we can change this by changing our language, but we need the system to support us in doing this……
Collaboration, positivity and the removal of burden of proof, could support an entirely different and positive outcome for our carers, and our economy.
Let’s just accept that caring is hard, and provide the support that is needed. Let’s not make our carers prove how hard it is over and over again – because, as we now know – this very action disempowers our carers and actually makes their situation even harder and in need of even greater support.
Carers need support to shine a light on the positive and to be supported to ‘not have to’ continually tell their woes.
Want to stay in touch?
You can help. Please share this blog. I want to raise awareness. Share it will your MP, your social worker, other carers. This issue doesn’t just affect carers of children with disabilities. It affects all carers. You may be caring for a sibling or spouse with a terminal illness, or elderly parents with dementia. Mental health is key to sustainably caring, and between us we can support a new system – a system that is funded appropriately and built around the positive.