For many, the word "hospice" means end-of life care for the terminally ill, but hospices do much more than that.
They provide social care, not just for the patient, but for their family as well.
It is that social care that hospices in the Midlands want to see recognised by the government and paid for out of the social services budget. At the moment they fund it themselves.
Issy Golden, 9, has Dravet Syndrome- an extreme form of epilepsy. She can have a seizure at any time, lasting anything from one minute to two hours.
Her mother says looking after a child with multiple problems is a full time job and says she could not do it without the help of her support worker at Acorns Childrens hospice.
– Jo Golden, 9-year-old Issy's mother
When you've got a child with any problems at all you struggle from day to day.
You need that extra support when you are dead on your feet and have had no sleep.
One in three people will be touched by hospice care at some point in our lives.
Paula's husband was brought to Loros in Leicester to get the pain from his cancer under control.
Paula Young said:
"Loros look at the situation holistically. They try to provide a service for the loved ones, to help you manage the situation you find yourself in which is distressing of course"
Social Worker Perin Towlson said:
"We help people to talk things through and problem solve some of their situations and sometimes they just need someone to listen, and talk about the problems they encounter as a carer or member of the family."
Although hospices see social care as part of their role, they do not receive from the social care budget to pay for it.
It costs just over £8 million to run the the children's hospices in the West Midlands. Just a third of that is paid for by the NHS. The rest of the social care budget they have to pay for themselves
The hospice movement are lobbying the politicians drafting the new Care and Support Bill. They want better access to funding in recognition of their wide role.
Chief Executive of Acorns David Strudley said: " We're not coming cap in hand at all. Their budgets take into account that children with life limiting conditions are looked after in children's hospices. It's not acceptable for local authorities to say we can't help. The money is there for this provision, it's just a question of priorities"
Community Support Worker Becky Harper believes that without the social care provided at the hospice many families would fall apart:
"I think they would manage, but I don't think they would cope. We tend to pick up the pieces when things fall for them as a family. Especially when the children are taken ill and taken into hospital. Everything seems to stop for the families".
The presure to provide a first class service which is funded predominantly by public donation means some hospices could struggle.
Chief Executive of LOROS Simon Proffitt said: "It's really tough. This year, for the first time, we are reporting a deficit, not just breaking even. One of the things we need to do as a country is connect health and social care in a more integrated manner. If that were done, the role that hospices play in providing social care and health care would be more recognised".
The draft Care and Support bill is still going through the parliamentary process and is unlikely to become law for a couple of years. In the meantime, hospices have their work cut out keeping up with demand and helping people with life limiting conditions live in comfort, with independence and dignity.
In a statement, the Department of Health said:
– Department of Health
We are providing over £10 million of central funding annually for children's hospices, and following on from the recent review into palliative care funding, we are supporting the development of new funding systems to be in place by 2015.
This will be fairer and more transparent, and help support more effective commissioning locally of services from hospices.