About Me
 

I have a rare condition called Klippel-Feil Syndrome. It creates a fusion in the cervical spine. Depending on the area of fusion, there can be related congenital conditions.

 In my case, I was born with a cleft palate, hearing loss, underbite, short neck with webbing (trapezius muscles are extended from the mastoid areas to the shoulders), painless restriction of cervical movement, scoliosis, and kyphosis and a rare aplastic anaemia.

My past trips have included trekking and rafting in the Himalayas, trekking in the Picos De Europa, various multi activity weeks in Devon and Wales, canoeing down the Miño River, on the Spanish/Portuguese border and  cycling Coast to Coast West to East and the Devon Coast to Coast using an all terrain electric wheelchair called a boma.

I have been volunteering in some form or another for 40 years! This includes working at a riding school for disabled (yes, despite my height I handled very large horses and carried bales of straw and hay! Then followed helping with a charity called Special Sport where my roles included admin, fundraiser and Trustee. Working with Special Sport is where my lust for adventure started. The charity closed in 2000. Then I got involved in disability access, campaigning, health and social issues. I’ve volunteered with Equal Lives, Inclusive Norwich, Norwich Kind City Map.

I now tend to do less but still in social care sector as I’m a Direct Payment user. I am

Co Chair Making it Real Norfolk, a Co Production group that works with Norfolk Adult Social Care to help shape and improve services for its users.

I am also Co chair Direct Payment Support Services Advisory Group, a group of Direct Payment users who help co produce and improve its services which include Payroll and Employment support. 

I am also a member of a sub group run by Norfolk Care Association which is for Individual Employers of Direct Payments