Financial Support & Benefits Guide for CSF Leak Patients in the UK

CSF leaks can significantly impact your ability to work and manage daily activities. The following resources can help you access financial support and benefits you may be entitled to:

Department of Work and Pensions (DWP)

Contact the Department of Work and Pensions to determine if you are eligible for any of these benefits:

• Personal Independence Payment (PIP)
• Employment and Support Allowance (ESA)
• Universal Credit
• Statutory Sick Pay (SSP)

Recent changes to the welfare system may affect available benefits. For the most up-to-date information, visit the DWP website.

Turn2Us Support

The Turn2Us website can help you find appropriate sources of financial support based on your specific circumstances. Their benefit calculator can help you determine what you might be eligible for.

Personal Independence Payment (PIP)

PIP has replaced Disability Living Allowance (DLA) for people aged 16-64. You may be eligible if your CSF leak affects your daily living or mobility. For detailed information, visit the PIP guide.

Benefits Advice

Citizens Advice provides free, confidential advice about benefits. Find your local Citizens Advice for in-person support.

NHS Healthcare Travel Costs Scheme

You may be eligible for help with travel costs through the Healthcare Travel Costs Scheme. Check your eligibility and how to claim on the NHS website.

Hospital Transport Services

Contact your local hospital’s Patient Transport Service through their PALS department. Find your local NHS PALS service.

We understand that attending medical appointments can be very stressful at the best of times.

For those with a CSF leak/orthostatic symptoms, this is made even more anxiety-inducing before the appointment even happens due to worry about the need to remain recumbent/flat as much as possible.

Patients may be entitled to free patient-transport to facilitate this need. Local authorities often provide stretcher ambulances for patients with a genuine need.

We advise you speak to your GP in the first instance, as well as the health-care provider who has issued you with your appointment.

For more information and help:

England - contact your GP as each health authority has a different policy

Wales - phone 0330-1232303

Scotland - phone 0300-1231236

Northern Ireland - contact your GP

Access to Work

The Access to Work scheme can provide practical and financial support. Apply online or call 0800 121 7479.

Employment Rights

Under the Equality Act 2010, employers must make reasonable adjustments. For advice, contact:

• ACAS Helpline: 0300 123 1100
• Equality Advisory Support Service: 0808 800 0082

Mental Health Support

Access mental health support through:

• NHS Mental Health Services - Mind: 0300 123 3393
• Samaritans: 116 123
• Local NHS IAPT Services

Rareminds wellbeing hub:

• Living with a rare condition
• Mindfulness relaxation and coping strategies

Practical Support

Brain and Spine Foundation

Free helpline 0808 808 1000 (Monday – Friday, 9am – 4pm)      

Specialist neuroscience nurses can answer your questions, recommend practical steps and provide the emotional support to you and your loved ones. Additional Brain & Spine Foundation support

Social Services Assessment

Contact your local authority’s social services department through the GOV.UK local council finder.

Blue Badge Scheme

Apply for a Blue Badge through the official application portal. Check your eligibility and required documentation before applying.

Additional Resources

• Disability Rights UK
• Carers UK: 0808 808 7777