Join other families and lobby your MP
Thursday 30th July 2015
Families from all over the UK met MPs at a reception at Parliament earlier this month. Families quizzed MPs about what they intend to do for families with disabled children in the area over the next five years in Parliament.
Now you can get involved too, by writing to your local MP about what you want them to do for families like yours.
Meet my Family event
Contact a Family organised the Meet My Family reception to give families with disabled children the opportunity to meet their MP and tell them more about their experiences of caring for disabled children.
At the reception families told MPs about some of their top concerns, including the lack of childcare and long waiting times for treatment and support for their disabled children. MPs also heard about the enormous contribution parent carers of disabled children make by saving the NHS and economy £119 billion each year.
Ruby Edwards from near Pershore told Nigel Huddleston MP how tricky it is to navigate the systems when you have a child with a rare condition.
Ruby, whose seven year old son Noah has five rare platelet function disorders as well as a condition called Thrombocytopenia, said she was delighted to be able to meet her local MP.
"Anything Nigel can do to help local people to raise awareness of the challenges we face will be very much appreciated."
Nikki from Lancashire told Mark Menzies MP about the problems she is having accessing short breaks for her 13 year old daughter Antonia. Antonia has an incredibly rare chromosome deletion that has caused her chronic developmental delays and behavioural issues.
"There is a statutory requirement for the Local Authority to provide a wide range of services for disabled children, including short breaks, but where we live we have nothing," said Nikki.
"Anything Mark can do to help people in my position to raise awareness of the difficulties we face will be very much appreciated."
Tell your MP to work with us for disabled children
MPs pledged their support to listen and work with Contact a Family and with families to secure a brighter future for the growing population of disabled children.
You can get ask you MP to pledge support by writing to them using our template letter.
Amanda Batten, chief executive of Contact a Family, said:
"As it is the start of a new Parliament, we thought it was a great opportunity to bring together MPs with families to hear, first hand, what life is like if you have disabled children to care for.
"Too often the fantastic contribution that the secret army of parent carers make to their communities and the economy is overshadowed by poverty, isolation and misunderstanding. Their contribution also often comes at a high personal cost in terms of income, relationships and health.
"Contact a Family wants to change this, to celebrate this invaluable contribution and to work with families to help MPs understand the realities of family life with disabled children."
Thanks to everyone who attended our event
Members of the National Network for Parent Carer Forum (NNPCF) came to talk to MPs about the thousand of parent carers involved in improving local services and why it's important that funding to support the local parent carer forums continues.
The Mathieson family were also at the reception and were able to talk to MPs about their recent win in Supreme Court on the DLA takeaway in hospital rule.
Thanks to everyone who attended the Meet my Family event and made it a special day.