70 years of the NHS - 1948-2008 

We’re marking the NHS’ 70th birthday this week with a series of blogs from autistic people, parents and professionals. In this one, Emily Swiatek, recounts a recent health scare and explains why she’s so grateful for the NHS. Emily is autistic and works in our Employment Training and Consultancy team.

 

Emily SwiatekI love the NHS. Even now, with all the flaws and pockmarks that have come as a result of years of underinvestment, I still love it. Why? Because free healthcare is one of the most fundamental rights and I feel so fortunate to have benefited from it so many times.

I didn’t realise quite how fortunate I was until I found myself being briskly wheeled down the corridors that ran from Liverpool Royal’s A&E to their CAT scanner in early April with a suspected stroke. I’d not long turned 31, and I was terrified. I babbled incoherently to the nurses, with slurred speech from my facial droop, and let them soothe my fears. When we returned back to the emergency room, they tried to get a cannula in my arm, just in case it was a stroke. It was the fifth time and I still wouldn’t let them near me (I’m petrified of needles) but this time I remembered the most important thing I hadn’t told them - “I’m autistic”.

In the space of seconds, everything changed. Five nurses became two, I was asked if I needed the lights off (I did) and questions were asked one at a time, with space for me to process. I felt a little breathing space come back to me.

I trundled home, my symptoms wearing off and no sign of a stroke, only for them to come back again the next day. Another trip to hospital for me, and, eventually, my first proper admission.

Now, it’s important here to remember that I love the NHS. And that I understand exactly how stretched and squeezed its precious resources are. That isn’t the fault of the people delivering care. However, my admission is where things started to fall apart.

I told everyone that I met that I’m autistic. However, I don’t fit the stereotype that many people have in their heads. I’m not a man, I’m not shy, I’m in my early 30s. And it seemed like in hospital, with changing staff, this meant that it slipped people’s minds. They couldn’t quite seem to take in that someone like me would have that. No matter how many times I mentioned it, nothing seemed to change and instead got worse and worse.

Which is how I came to find myself crying at 2am on a Saturday night, curled up on a plastic chair in the corridor of my ward, begging a nurse to sedate me so I could sleep. I’d spent the past three days in a room with a woman who was sick 40+ times a day. At first, I’d been so unwell and so heavily medicated that I barely noticed but then it all became too much. The smell, the sound, the brightness of the lights combined with the lack of sleep pushed me to a meltdown and in hospital, there are no quick answers. So I sat on the plastic chair, alone, and cried.

This is where the beauty and brilliance of the NHS comes in and a health care assistant named Charlotte came to sit with me, asking me what I needed and how my autism impacted me.

 

Charlotte became my buddy over the next week. She helped run a small charity that supported autistic youth in her spare time and she advocated for me at every point she could. Even though she was one of the more junior and lower paid members of staff, she stood up to senior nurses and consultants who didn’t understand, who dismissed my autism as anxiety or being fussy, who couldn’t grasp why a sudden change would have me weeping and why the noises of an oxygen tank at night left me so distressed. She wasn’t alone in fighting my corner but all the nurses and staff members who did had one thing in common: a pre-existing connection to autism.

Whilst it was wonderful to have some really positive and caring experiences, there were an equal number that left me feeling lost, confused and dismissed. A couple of weeks after I returned home, I discovered that there was actually a whole team of autism specialist nurses that I could have been put in touch with to make sure my needs were met, and yet, no matter how many times I said I was autistic, the team were never mentioned. I can only assume this is because I just don’t fit the stereotype. When I say “I’m autistic”, I often get this look (if you’re autistic yourself, you’ll know the one I mean) where I see people searching for it, trying to work out if I’m joking or not.

We shouldn’t need to rely on people already knowing someone autistic in order to get the care we deserve and it saddens me that even with the efforts we’ve seen in the past few years for understanding, there’s still so long to go in breaking the stereotypes.

 

And yet, I still love the NHS. I appreciate every person who works as part of it to bring us free healthcare, to be there for us when we’re at our lowest points and make sure we come through. And I’m grateful for people like Charlotte, who go that extra mile to fight our corner and give us the quality of care that we deserve.

 

For information and advice about accessing, health and care services, including a downloadable ‘Hospital Passport’ to help communications between autistic people and health staff, please visit: www.autism.org.uk/about/health.

 

Read Mark Lever's NHS70 blog

 

Read Isabelle Garnett’s NHS70 blog