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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

TFN is published by the Scottish Council for Voluntary Organisations, Mansfield Traquair Centre, 15 Mansfield Place, Edinburgh, EH3 6BB. The Scottish Council for Voluntary Organisations (SCVO) is a Scottish Charitable Incorporated Organisation. Registration number SC003558.

Helping families coping with incurable brain disorder

This news post is about 9 years old
 

Charity appoints financial wellbeing officers to offer advice to families of people with Huntington's

A charity has appointed three new financial wellbeing officers to offer advice to the families of people with the degenerative brain disorder Huntington's disease (HD).

The Scottish Huntington's Association (SHA), the only charity in the country supporting HD families, has set up the new Financial Wellbeing team thanks to a £357,000 from the Big Lottery Fund.

Iain Thompson (above), a former advisor with the Citizen’s Advice Bureau, is the latest recruit to join them.

He said: “It will be our job to advise and support families through the complex world of personal and family financial planning.

It will be our job to advise and support families through the complex world of personal and family financial planning

“We will be here to help people living with HD with the many money issues they face. The debilitating nature of the disease means that people need to stop working relatively early with 67% of families affected living on an income below the national average and 33% living below the poverty line.

“But as well as help with day to day finances people living with HD face the reality of eventually not being in control of their own destiny and need to plan ahead for this time. We are now in position to help them through these difficult decisions that need to be taken.”

HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues.

The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages.

Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.

It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.

Iain added: “People having to cope with the deteriorating health do not want to have to worry about their financial position as well. The team will be here to make life easier for the many families who struggle financially due to having the condition.”