Write to your MP

Write to Your MP for CSF Leak Week  

1-7 June 2026

Ask your MP to support people living with CSF leaks

Thousands of people across the UK are living with CSF leaks — a serious but treatable neurological condition that is still widely under-recognised and misdiagnosed. During CSF Leak Awareness Week, we’re asking supporters in the UK to help change this by writing to their local MP.

CSF leaks lead to spontaneous intracranial hypotension (SIH) which causes severe, disabling symptoms including daily orthostatic headaches, cognitive difficulties, sensory problems, reduced mobility, and loss of employment. Many patients wait months or years for the correct diagnosis.

Although effective treatments and clinical guidelines already exist, access to diagnosis and specialist care remains inconsistent across the UK. There is no nationally coordinated NHS pathway, meaning outcomes often depend on location and local expertise.

This leads to unnecessary suffering, repeated hospital visits, and delays in treatment.

By contacting your MP, you can help to:

Highlight delays and postcode variation in care

Ask what action is being taken to improve NHS pathways

Support the development of a coordinated, specialist approach

CSF leaks are treatable. With earlier diagnosis and better access to care, many lives could be significantly improved.

Writing to your MP helps to drive change.

How you can help

Find your MP: here 👉 https://members.parliament.uk/FindYourMP

Put in your postcode to display your MP’s contact details.

Click on their email address to open an email to them in your mailbox.

Compose your letter - It’s more powerful to write in your own words, share your experience, including, delays to consultations, scans and treatment, barriers faced and the impact on your life and those around you.

Or if you prefer use/adapt our template letter below.

Write to Your MP

Email Template: 

Subject: Please Support Better Healthcare for CSF Leak Patients

Dear [MP Name],

I am writing as your constituent and as someone who has been personally affected by a cerebrospinal fluid (CSF) leak to ask for your support for people living with CSF leaks.

A CSF leak is a serious and disabling condition leading to Spontaneous Intracranial Hypotension (SIH). Although effective treatments exist and a Multidisciplinary Consensus Guideline for the Diagnosis and Management of SIH endorsed by the Association of British Neurologists is available, access to specialist diagnosis and care remains inconsistent. There is currently no clear nationally coordinated NHS pathway, meaning outcomes often depend on postcode, local awareness, and access to specialist expertise. More information about the condition and patient experience can be found via the CSF Leak Association (https://csfleak.uk).

While considered relatively rare, they are widely under‑recognised and frequently misdiagnosed. Patients experience severe orthostatic headaches, cognitive difficulties, visual and hearing symptoms and reduced mobility.

Evidence suggests that many patients face delays of months or even years before receiving an accurate diagnosis. During this time, individuals may cycle through multiple NHS services without effective treatment and some develop preventable complications or long‑term disability. This lack of coordinated care leads to avoidable suffering, repeated hospital visits, significant burden on the NHS and long‑term impacts on patients and families. 

Recent research shows that the condition severely impairs ability to work, but early treatment restores work capacity, reducing long‑term disability and avoidable economic and societal costs.

I would be grateful if you would support people affected by CSF leaks by:

1. Raising this issue with the Secretary of State for Health and Social Care

2. Asking what action is being taken to improve NHS diagnosis and treatment pathways     for CSF leaks and SIH

3. Supporting the development of a nationally coordinated pathway or specialist service, so patients can access timely, evidence‑based care regardless of postcode

CSF leaks are disabling but treatable. With earlier diagnosis and better access to specialist care, outcomes for patients could be significantly improved.

Yours sincerely,
[Your name]
[Your postcode]