Day 2: Fighting for my care and remembering to rest
Yesterday, I shared the first day of what I hadn't particularly planned to become a public diary about fighting for my care. I published a blog explaining why I have had to take sick leave while I navigate the consequences of being found no longer eligible for NHS Continuing Healthcare. I also shared a short video showing a little of what 24-hour support actually enables me to do.
The response has been overwhelming. I've received messages from disabled people, professionals, friends, colleagues and people I've never met. Some have offered support. Others have shared their own experiences of navigating NHS Continuing Healthcare and social care. On Instagram alone, I had 955 followers yesterday. As of 5pm today, that has risen to 1,019. Thank you. I will respond individually to those of you who have messaged me. It might just take me a little while.
Today, however, I've deliberately done very little. My little boy has been home with me, so he's kept me occupied, and I've tried to remind myself of something that is surprisingly difficult when you're in this situation: I am actually off sick. I didn't sleep particularly well again last night, and I'm trying to find a balance between fighting what is happening and giving myself the space to recover from the psychological impact of it.
There isn't a significant update on my case today. I'm still waiting for the NHS's full written justification explaining why it has decided that I no longer meet the criteria for NHS Continuing Healthcare. I'm expecting that early next week. Until I receive that, there is only so much I can meaningfully do.
A lot of people have asked how they can support me. For now, sharing yesterday's blog or video and helping this conversation reach more people is enough. Because one thing has become increasingly clear from the messages I've received: this isn't just about me. My experience is one person's story, but there are many disabled people navigating the boundaries between NHS Continuing Healthcare and local-authority social care.
And I want to make sure the conversation we're starting isn't reduced to whether one Health Psychologist who happens to work full-time should receive support. Working-age disabled people deserve the support required to live their lives, whether they are in paid employment or not. Employment shouldn't be the measure of somebody's worth, independence or right to live an ordinary life. That's the bigger conversation I want this diary to contribute to.
So that's Day 2. Today I've rested. I've been Mum. I've read your messages. And tomorrow, we'll see what happens next.
Follow the conversation
Day 2.
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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