NHS Reform and Rare Conditions: A Disasterpiece in the Making?

What the government's plan to dissolve NHS England could mean for people with EDS and other complex conditions

Let’s be honest: if the NHS were a person, it would be on its third coffee of the morning, holding itself together with a hair tie and a whisper of hope, while someone from Downing Street stands behind it threatening to "streamline" it with a hammer. And now, in a bold move that absolutely nobody with a long-term condition asked for, the UK government is planning to dissolve NHS England.

Yes, you read that right. The government is scrapping the organisation that currently plans, funds, and runs most of the NHS in England. Instead, those powers are being absorbed into the Department of Health and Social Care. Because when something isn’t working well, what better solution than to toss it back to the politicians who broke it in the first place?

Wait—What Even Is NHS England?

In short, NHS England is the central body that oversees healthcare services in England. It manages billions of pounds, sets national priorities, and is supposed to ensure that everyone gets the care they need. Think of it as the project manager of the NHS. Not perfect, but at least it has a to-do list.

By dissolving it, the government will bring its responsibilities directly under ministerial control. This means less autonomy for healthcare leaders and more direct political oversight. What could possibly go wrong?

And What Does That Mean for People with EDS?

Glad you asked. For those of us living with rare, complex, or chronic conditions—like Ehlers-Danlos Syndrome—this move is the policy equivalent of playing Jenga during an earthquake.

NHS England at least pretended to care about rare disease frameworks. It helped coordinate specialist care (however inconsistently), and it created just enough structure that you could occasionally sneak through the system and see someone who knew what collagen was. That delicate web is now up for grabs. Here’s how it might unravel:

• Specialist services could be deprioritised. When politicians hold the purse strings directly, they often focus on short-term, high-visibility wins. Chronic illness doesn’t trend on Twitter.

• Access may become even more postcode-dependent. The government says it wants to cut bureaucracy, but that may just mean pushing more decisions to local trusts, who are already overstretched and underfunded. Translation: whether or not you get care could depend entirely on your local area's appetite for rare conditions.

• Waiting times could skyrocket. Reorganisations are rarely smooth. As roles shift and confusion reigns, referrals, diagnostics, and treatments are likely to get delayed. Again.

  
  

Could There Be a Silver Lining?

In theory, yes. If managed well (and if pigs take flight), this reform could reduce inefficiencies and get money to where it matters most: patient care. But that only works if:

• Patients and advocates are genuinely consulted.

• Protections are put in place for rare and complex conditions.

• The government resists the urge to micromanage every aspect of healthcare delivery for the sake of a headline.

  
  

What Can You Do?

If you’re living with EDS or another chronic condition, now’s the time to:

• Speak up. Write to your MP. Ask them how people with complex conditions will be protected during these reforms.

• Engage with advocacy groups. Organisations like EDS Support UK and Genetic Alliance are already watching this closely. Join them.

• Document everything. If your care is delayed or denied, keep records. They matter.

• Stay informed. Reforms like this have a way of being quietly rushed through while we’re all distracted by other chaos.

  
  

Final Thoughts

This isn’t just a bureaucratic shuffle—it’s a seismic shift in how the NHS is run. For people with conditions that are already under-recognised, underfunded, and under-treated, it could be devastating—or, if enough of us make enough noise, it could be a moment to demand something better.

The NHS needs reform, yes—but not like this. Not at the expense of the people who rely on it the most.

Because when the dust settles and the slogans fade, we won’t be counting efficiency savings. We’ll be counting who got left behind.

Written for Unremarkable Me by Toni, who—despite being held together by tape, tea, and sheer spite—still believes in the NHS. Just not in this government’s ability to fix it properly.

Sources:

1. UK Government News: "World’s largest quango scrapped under reforms to put patients first" – https://www.gov.uk/government/news/worlds-largest-quango-scrapped-under-reforms-to-put-patients-first

2. NHS England Elective Care Reform Plan (Feb 2024) – https://www.england.nhs.uk/publication/reforming-elective-care-for-patients/

3. The Guardian: "Britain’s welfare overhaul will target disability benefits" (March 2025) – https://www.theguardian.com/politics/2025/mar/18/britain-welfare-overhaul-disability-benefits-pip-liz-kendall

4. Financial Times: "Labour plans to cut number of public sector regulators" – https://www.ft.com/content/a6455191-7735-4ebe-a391-be9599c2c522

5. Wikipedia Summary of Martha’s Rule – https://en.wikipedia.org/wiki/Martha%27s_Rule

6. Wikipedia Summary of NISTA – https://en.wikipedia.org/wiki/National_Infrastructure_and_Service_Transformation_Authority