As many Families will be aware the access to financial support of any kind is hard to secure, even in the direst of circumstances.
Many Families are turned down by DLA assessors for financial support for their children because the DLA assessors’ guidance does not include children’s heart conditions, or the problems heart disease can cause are not necessarily solved by surgery and may be part of a syndrome with many other difficulties for their child.
The DWP (Department for Work and Pensions) do not have anything about CHD or childhood heart disease in either their child or adult assessors’ information pack. Recommendations have been submitted to them via CHF but as yet with little recognition or success.
Several Heart Charities and other charities are working hard to make access to funds more attainable and we can provide some leads and links as follows:
Little Hearts Matter
have a series of support documents for DLA and PIP as well as a yearly updated Benefits book. It is designed for single ventricle specific conditions but can be used by families of children or adults with other complex disorders.
Most of it is available on the website but the PIP booklet is going through a final review at present.
LHM also offer one to one support on application and then further support at appeal but do not represent people at the appeal.
The Somerfield Foundation
working with a GUCH specialist nurse (who helped with screening questions) and a specialist travel insurance company have put together a product that they hope will better meet the needs of congenital heart patients and their families.
help financially disadvantaged parents caring for a child with a life limiting illness. Application forms are available from Lisa McCluskey on firstname.lastname@example.org She is the family liaison manager for React.
The Children’s Heart Federation
has been in correspondence with the DWP, as has LHM, but progress in getting heart conditions recognised, whether congenital or acquired, is slow and may be in review for the next 12 months.
As we at Heartline Families develop this website we shall set up a page on such matters and endeavour to keep you informed, and direct you to sources of further information and possible funding.
DH 2nd May 2016