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UK Benefits and Support

Government Benefits

Once you have a diagnosis, your child will be eligible for certain benefits. These include:

  • The PIP (Personal Independence Payment), previously known as the DLA (Disability Living Allowance). The higher rate rate component is approximately £80+ a week. When your child is three or older, they will become eligible for the mobility component (the higher care mobility component is approximately £60+ a week).
  • If you have given up your job to care for your child, you are eligible for the Carers Allowance. Approximately £60+ a week.
  • Blue Badge for access to disability parking.
  • Most medications, basic therapies, specialist supportive equipment and doctors appointments should be free to you on the NHS. This should include: a metabolic consultant (to manage NKH), a neurodisability consultant (for any seizure activity) and possibly but not necessarily a respiratory consultant (for breathing/suction/oxygen needs), an ophthalmologist (for eyes) and a palliative care consultant. Your therapy team is likely to include: a physiotherapist, an occupational therapist, a speech and language therapist, a dietician and a wheelchair services contact.

Additional funding

We know the NHS is underfunded, and often the need for equipment or therapy that would drastically improve your child’s quality of life is not covered. In this case, we suggest you apply for charity funding to make up the difference where possible. Below are list of charities that fund equipment/therapy in the UK.

Special Needs Holidays

There is a large number of facilities and charities to help with holidays in the UK.  For a list, please see the UK Experiences Page.