Living with NPH

Below are some of the additional ways Shine can support you to live well with NPH.

 

Driving and NPH

You must notify DVLA if you have NPH with any symptoms, and complete Form B1. If you have surgery, you will need to surrender your licence for 6 months, or until you are fit to drive again, whichever is longer. You will need to reapply for your licence, and DVLA will request confirmation from your Neurosurgeon that you are fit to drive again. You are always responsible for ensuring you are fit to drive, even if your medical team gives permission.

You do not need to notify DVLA after lumbar puncture, ICP monitoring or having the setting changed on your programmable shunt.

 

What other support is available?

Occupational Therapy (OT)
This service can assess and advise you on any adaptations or equipment which may make your daily life easier, for example showering, dressing or accessing your bathroom. Disabled Facilities Grants can help pay for adaptations to your home. Contact your local Social Services department for more information.

Physiotherapy
A Physiotherapist can advise on exercises and activities to keep you mobile for as long as possible, as well as mobility aids.

Mental Health
Contact your GP if you need support with your mental health or mood.

Financial support
There are several benefits available for people who have a long-term physical or mental health condition, or disability, such as Attendance Allowance and Personal Independence Payment. Eligibility depends on many factors. See Shine’s Benefits section on the website, or contact Shine on 01733 555988 to discuss what is available with one of Shine’s Support and Development Workers.

 

Shine’s specialist services

If you have Normal Pressure Hydrocephalus, live with or care for someone who does, or are a professional providing support - we’re here to help.

Support and Development Workers (SDWs)

Support and Development workers are on hand in England, Wales and Northern Ireland to help you make informed choices and to provide confidential information, advice and support on any of life’s ups and downs.

Common requests include:

• Understanding health conditions and treatment options
• Continence issues
• Support for unpaid carers to access respite and assistance with getting care assessments/care packages
• Housing adaptations
• Benefits for the person with NPH and their unpaid carer

Through our Support and Development Workers you also have access to Shine’s additional services, including our Health Team.

Shine’s Health Team have significant experience in the conditions we represent and understand the concerns, frustrations and possible choices you might face in gaining an accurate diagnosis and treatment plan for NPH.

As well as supporting NHS specialist clinics, arranging training and information for Shine members, and fellow professionals, and arranging one-stop health checks through Shine’s Virtual Health Hubs, they can advise individuals and their loved ones/carers on a one to one basis, on matters such as:

  • Getting a diagnosis for NPH
  • Shunts and ETVs (endoscopic third ventriculostomy)
  • Continence
  • Depression or anxiety
  • Orthopaedics
  • Physiotherapy
  • Equipment and adaptations

In addition - for the health-care professionals in your life – our CPD accredited e-learning course on Normal Pressure Hydrocephalus can be accessed from the Professionals area of the Shine website to give professionals a more detailed insight into the condition.