Clare Lally has already bought the Christmas presents for her whole family.

She has been told by doctors that her three-and-a-half-year-old daughter Katie will not survive childhood and has to be prepared to bring forward the date.

Katie is quadraplegic but can shuffle across the floor at great speeds. She suffers cerebral palsy and bulbar palsy, which means she cannot swallow. Her food is fed to her through a tube in a stomach and yet she can communicate her needs and moods through sign language and her facial expressions.

She and her twin sister Holly shriek and giggle and squabble like other siblings. Their parents care for Katie 24 hours a day – taking shifts at night to ensure one parent is always awake and by her bed in case she chokes.

Her conditions are life threatening and her mother has been told she will not survive childhood but because she is not dying her parents cannot access respite care. “For a long time the word ‘hospice’ was too frightening but then gradually we were persuaded to get help with CHAS,” says Clare, 29.

“They were incredible but once Katie started to improve outwardly –she started to learn to sign and gained weight – she no longer fitted their criteria. I don’t blame them at all.

“They provide an excellent service and are a charity but the Scottish Government needs to address the lack of respite care – particularly for children under-five.”

Katie spends much of her time shuttling to and from hospital. Her sister Holly panics at the word ambulance and her parents reassure her Katie is not going back to hospital, not today. “We split shifts to sit with her at night,” says Clare. “If she chokes she doesn’t make any noise and she has no way of protecting her airways so she needs regular suction. She has to be watched all the time. She also has cerebral irritability, which means she sometimes screams for days.

“I’ve been told she won’t survive childhood so I want to make sure her life is the best it can be. I love her exactly as she is and wouldn’t change anything about her. If we could get some respite care that would make such a difference to all our lives.”

Clare and her fiance Derek Steel, 34, plan to get married next year and are saving up for the event but are concerned that may be too far in the future for Katie. From midnight to 3am each night her father Derek will sit with Katie and then from 3am to 6am Clare takes over.

At 7am Derek goes to work and her mum plugs Katie into her feedings tube and she sits in her customised pink chair watching cartoons. Her favourite film is Mamma Mia! Using sign language, she demands to have the DVD on while we sit with them.

Sometimes they will be visited by a speech and language therapist. While Katie is in her chair her sister Holly has breakfast and then may go to nursery. Katie spends some time at the nursery but her mother usually has to stay there with her. “I went to Holyrood to meet ministers and other families and then met recently with Shona Robison to explain the problems with Scotland having non-respite care for certain familes,” she says.

Shona Robison, the Public Health Minister said: “Scotland’s two children’s hospices do a very valuable job. However, they cannot provide respite for children whose health improves to the point where they are no longer considered to have palliative or end-of-life care needs. In those circumstances we would expect the needs to be met by the local health board and local authority.”

Call to build city hospice

Exclusive by Lucy Adams

Doctors are demanding a hospice be created in Glasgow to care for the hundreds of children with terminal and life-limiting conditions whose families receive no respite.

The aim of the hospice is to provide counselling, pain management, family support, respite care and end-of-life care for some of the 897 families in the West of Scotland thought to be affected.

GP Jamie McKelvie, medical director of the Glasgow Children’s Hospice Campaign, has already signed up a number of other doctors and is consulting the health board.

Figures suggest there are more than 1500 children under-19 across Scotland who will die each year from cancer and life-limiting conditions such as cerebral palsy.

Currently Dr McKelvie claims hospices provide end-of-life and palliative care for just 204 children each year in Scotland. He said: “In England 93% of children live within 30 minutes of a children’s hospice. In Scotland just 4% of children live within 30 minutes of a hospice.

“Glasgow is one of the largest cities in the UK and yet it has no hospice. It is clear that something more should be done.

“There are 1000 children who need nursing care and paediatric care at night who do not receive it. These children and their families are left on their own to cope. Parents are forced to give up their jobs to provide care 24/7. CHAS provides excellent rural hospices but for many children the hospices are just too far away.”

Katie Steel is just three-and-a-half years old but she suffers from cerebral palsy and bulbar palsy and her parents have been told she will not survive childhood. Her mother Clare Lally is struggling to access respite care. Katie used to attend a CHAS hospice but no longer meets their criteria because she does not currently require end-of-life care.

Public Health Minister Shona Robison said: “I met Ms Lally just last month and we had a very positive meeting. I agree with her that historically there has not always been enough respite care for the families of children with disabilities, and that’s something we’re taking steps to address.

“The new carers strategy commits to providing the voluntary sector with £1million in 2010-11, in order to develop innovative and flexible short breaks for carers. We have now decided to roll this investment over for a further four years and it is my expectation the parents of children with disabilities will be among the priority groups who will benefit from the respite care that this new investment of £5m will deliver.”

A spokeswoman for NHS Greater Glasgow and Clyde said: “Our Chairman, Andrew Robertson, has responded to Dr McKelvie after seeking opinion from both the NHS paediatric service and externally. Both have indicated no additional hospice accommodation is required.”