Day 1: When fighting for your care becomes a full-time job
I started writing this at 5am this morning. I was awake, feeling queasy and full of anxiety. Today is Day 1 of my second bout of sick leave in the past year.
I’m Dr Rupy Kaur Roberts. For those who don’t know me, I’m a Health Psychologist. I’m of South Asian heritage. I’m a woman, a wife and a mum to a little boy who is almost two. I live in my own home. I work full-time. I have a 24-hour care package and employ 14 Personal Assistants (PAs).
Without that support, which has taken me years to build, I would not have the life I have today. I wouldn't be able to get out of bed in the morning. I couldn't go to the toilet, shower, get ready for work or do all of the ordinary things that allow me to participate in family life and society.
Last week, I wrote about something I have experienced throughout my life: “My needs are lifelong. So why do I keep having to prove them?”
This week, I suppose I'm experiencing the consequences of that question. Yesterday, I received news that could result in approximately 20% of the funding for my care package being removed. To put that into perspective, we're talking about almost 36 hours of support every week. Thirty-six hours!
Without that support, there would be periods when I simply couldn't get out of bed or go to the toilet. I could potentially be left lying in my own waste. That sounds dramatic, but it is the reality of my impairment.
And yet today, instead of going to work, I am taking sick leave so that I can work out how to protect the support that enables me to work in the first place. I want to be very clear about something: this isn't because of my employer. My employer has been incredibly supportive. This is not work-related stress. I feel as though this sick leave has been imposed on me by the process I am having to navigate.
So, what have I done today?
When I started writing this at 5am this morning, I had a list of things I knew I needed to do.
First, I've self-certified as being off sick and informed my manager and the relevant people at work. As I've said, this isn't because of my employer. They've been incredibly supportive. I'm taking time away from work because the anxiety caused by this process is now affecting me both psychologically and physically.
Last week, I thought I had a stomach bug. Looking back, I now think much of what I was experiencing may have been anxiety.
Second, I've spoken to my social worker: This is where things get complicated. At the moment, my care is funded by two different systems. My local authority, essentially, my council's social care department funds around 80% of my support. The NHS has historically funded the remaining 20%.
The NHS has now decided that I am no longer eligible for NHS Continuing Healthcare, or CHC. If you've never heard of CHC, you're probably not alone. In very simple terms, it is ongoing care funded by the NHS for adults who are assessed as having what is called a “primary health need”.
The 20% previously funded by the NHS equates to almost 36 hours of my support every week. So today I've asked my social worker whether the local authority can continue funding that 20%, without prejudicing the ongoing appeal, while I challenge the NHS decision at the next stage. I'm now waiting to find out what happens.
If you're already confused, I don't blame you. I'm living it, and I find it confusing. And that's part of the problem. When one organisation decides it is no longer responsible for funding part of someone's support, why is the disabled person left trying to work out which organisation picks it up next?
Third, I've contacted a solicitor: I've already challenged the NHS decision locally through my Integrated Care Board. The next stage is an Independent Review through NHS England. I've asked what it would cost to have legal support as I take this forward. The answer? Between £3,000 and £4,000. So that's another decision I now have to make. Do I try to navigate the next stage myself? Do I find £3,000–£4,000 for legal representation? Do I try to raise the money? All while dealing with the anxiety of potentially losing almost 36 hours of support every week.
This is why I've taken time away from work. There is simply no way I could give my job the attention it deserves while simultaneously trying to navigate all of this. And this hasn't happened overnight. I've spent months being assessed, reassessed, waiting for decisions, challenging decisions and waiting again.
Today alone I've had to become a patient, an employer, a care coordinator, an advocate and someone trying to understand an NHS appeal process. All to protect the support that allows me to live and work independently.
Why am I talking about this publicly?
I've been reluctant to talk publicly about some of this. Partly because I am a Health Psychologist myself. I work within health and social care spaces, and talking publicly about my own experiences with these systems has sometimes felt uncomfortable.
But I'm beginning to think the opposite. Perhaps being both a health professional and somebody who has spent a lifetime navigating these systems gives me a responsibility to talk about what actually happens to people inside them.
And the timing couldn't be more relevant. This week, Andy Burnham has been talking about reforming social care and creating a National Care Service. That national conversation matters, but there is something I desperately want to see included in it: working-age disabled people. Social care isn't only something people encounter towards the end of their lives. I've relied upon support throughout mine. It enabled me to go to university. It enables me to work, to be a wife and a mum, and to contribute.
At 21, after finishing university, I was once told that I might need to move into a care home. I refused to accept that as the future available to me.
Nearly two decades later, I've built a very different life. But I'm still navigating systems that don't always seem to talk to one another. I'm still having to prove what I need. And now I'm taking time away from the job I am perfectly capable of doing so that I can fight to retain the support that enables me to do it.
That's the contradiction I want policymakers to understand.
So, Andy Burnham, if you happen to read this as you talk about the future of social care, please remember people like me. Working-age disabled people are already living within the system you're talking about reforming. We have careers. Families. Relationships. Ambitions. And some of us are exhausted from having to continually fight for the support that makes those lives possible.
For now, this is Day 1.
I started writing this at 5am, feeling sick with anxiety and wondering how I was going to deal with everything ahead of me. Since then, I've self-certified from work, spoken to my social worker about what happens to almost 36 hours of my support, and discovered that legal representation for the next stage of my appeal could cost me between £3,000 and £4,000.
And I'm still waiting for the NHS's full written explanation of why its decision was made.
Tomorrow, I'll tell you what happens next. I'll keep documenting this, including what the process is doing to me psychologically, because I suspect I'm far from the only person living through it.
Follow the conversation
This is only Day 1.
Over the coming weeks, I'll be documenting my experience of navigating NHS Continuing Healthcare and social care as a working-age disabled woman, alongside my perspective as a Health Psychologist.
I'll be exploring disability, independent living, mental health and what our health and social care systems actually feel like for the people who have to navigate them.
If you'd like to follow this series and read more about disability, psychology, health and social care reform, sign up to my newsletter below.
Dr Rupy Kaur Roberts
Health Psychologist | Founder, RKR Psychology & Consultancy
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