09/02/2017 06:06 GMT | Updated 10/02/2018 05:12 GMT

A Budget For Those Who Are Just About Managing To Survive

© Milo Robinson / Alamy

In exactly 4 weeks' time the Chancellor will rise to his feet in the House of Commons to deliver his Spring Budget speech.

The budget comes at a pivotal time for policy and politics in the UK as we move towards Brexit and a new era of international relations with the election of President Trump.

There is a concern, reported in some quarters, that the magnitude of these broader issues is such that it is creating an everyday policy vacuum, with other vital issues ignored or relegated to the side lines.

So this will be a budget that allows the Chancellor to refocus attention onto the domestic agenda, to reassert how the Government will help those who are 'just about managing' and shine a light on the ambitions of a 'shared society.'

I for one will listen keenly. Tragically, at Together for Short Lives, we hear every day how families are fighting to get the support they need to care for their children who have life-shortening conditions. There are over 49,000 children and young people who have such conditions. They are the most vulnerable in society, with the weakest voice - so often not heard or sadly, just ignored. They are simply just about managing. Their children are in fact just about managing to survive.

To draw urgent attention to the needs of these children and their families, Together for Short Lives held an event in Parliament this week #ForThe49000. The event, which coincided with the Committee Stage of the Brexit Bill, saw a group of compassionate and dedicated Parliamentarians form an All Party Parliamentary Group for children who need palliative care. This will give these children and their families a much needed and powerful voice across Parliament.

We should all be here for the 49,000. But, on the rare occasions their stories are publicised, too often TV channels are switched over, newspaper pages turned or social media swiped. We reassure ourselves that this kind of thing won't happen to me. But what if it did happen to your child, your friend's child, your nephew or your niece?

I thought about this at our Parliamentary event. We heard from Frank's mother, Rachel Thompson. At birth Frank was a 'normal' child. He was diagnosed with ate infantile Batten disease aged four. This is a rare, incurable, neurodegenerative disease which resulted in Frank losing his mobility, his speech, his sight, and his ability to swallow and eat safely. Frank suffers from seizures and dementia. He is completely immobile, fed through a tube and needs assistance with breathing. He requires extensive medications to control symptoms and needs 24 hour care.

This is the reality for many families making up a hidden population who are just about managing. Rachel and Frank's is but one story of struggle and pain. We hope their story and that of 49,000 others echoes and reverberates across Westminster and into the Treasury.

For there is much that can be done. We believe there are seven economic steps to helping build and sustain a shared society for children, young people, and their families with life-shortening conditions. I have outlined two steps below.

Treasury can help address the postcode lottery in funding for children's palliative. We can follow the example set by Scotland where they have increased funding for children's hospices so there is parity with funding for adult hospices. It is an outrage that on average adult hospices receive 33% of their funding from statutory sources and children hospices receive 22. Unless this is addressed then we, as a country, are making a judgement that we value the life of an adult greater than that of a child. That is not fair.

Secondly the Treasury can work with the Department for Work and Pensions to lift the baby benefit bar which currently means that children under 3 are unable to access the mobility component of welfare benefit since it is only available to those over three. This benefit would allow families to purchase or have access to a specially adapted vehicle which would allow families to travel safely with their children and the necessary bulky life support equipment they need.

As the mother and carer of Stanley appealed 'they just don't get it... Stanley needs that support now... it is unlikely that he will live till three.' The change required to support these families would amount to £5-6million a year. It would support and improve the lives of 1,500 children.

These steps would mean they and their families could start to play a part in the shared society.

Read Together for Short Lives' Budget 2017 Representation - 7 Steps to Improve Care

Read parent Rachel Thompson's blog - A Bewildering Array of Services