The needs of children with life-limiting conditions and their families are complex and a large proportion have long term needs. Many of the conditions are associated with progressive deterioration, rendering the child increasingly dependent on parents and carers.

Such conditions have been classified into four broad disease related groups by ACT and RCPCH (1997) and are detailed below. In summary the classifications include possibly curable (Group 1), periods of good health but limited life (Group 2), progressive disorders with no treatment (Group 3), non-progressive but severe (Group 4).

Group 1 Life-threatening conditions for which curative treatment may be feasible but can fail e.g. cancer, irreversible organ failures of heart, liver, kidney.

Group 2 Conditions where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal childhood activities, but premature death is still possible e.g. cystic fibrosis, muscular dystrophy.

Group 3 Progressive disorders without curative treatment options where treatment is exclusively palliative and may commonly extend over many years e.g. Batten’s disease.

Group 4 Conditions with severe neurological disability, which may cause weakness and susceptibility to health complications, and may deteriorate unpredictably, but are not usually considered progressive e.g. severe cerebral palsy.

Children experience health, illness and medical care differently to adults. They are dependent on their parents to help them to cope with their basic fears and desires, alongside the demands of socialisation and the development of their personal identity. The whole family has the difficult task of trying to adjust to a situation which is dominated by the stresses of long-lasting uncertainty and uncontrollability

Professionals have to an extent recognised the needs and complexities of providing care for these children and their families, yet current service provision to meet these needs is patchy and inconsistent, especially for children with life-limiting conditions.

All parents had had struggles to receive respite care and in the main all felt that they needed more respite provision, not just for the well being of their child but the family unit.

Where families were eligible to attend a children’s hospice, parents found the service provided them considerable support. Participants were very positive about the services and care received. Indeed most families viewed the hospice experience as a holiday for all the family.

Staff were reported to be very skilled, flexible and empathetic and parents’ expressed the desire to visit more often.

For many of the parents interviewed, to be able to cope with their situation frequent respite within and outside the home is required. More respite beds are needed and more community staff to ease the workload and demands on parents. Parents are forced into nursing roles due to lack of service provision and choice.

Many parents suggested that they would like a local respite facility that would be staffed to cope with their child’s health, medical and social needs.

Care Provision for Children with Serious and Life-Limiting Conditions in Calderdale and Kirklees: Service Review and Needs Assessment. Centre for Evidence Based Health Care, School of Human and Health Sciences

Alison Timlin BSc(Hons) MSc, Jane Nixon RGN BSc(Hons) MA PhD,
Karen Warner RGN RM BSc(Hons)

Commissioned by the West Yorkshire Forget-Me-Not Trust and Kirkwood Hospice

"Parents do need respite care, they do need a break from their child because it’s relentless but you are compromising the child’s health. A lot of these kids have very complex needs, they need one to one attention." Nurse

"It is twenty-four hours, seven days a week, fifty-two weeks a year for the people that it affects. It’s intolerable. It’s horrible and I would not wish it on anyone." Parent

""We would like to provide respite care but there are no services to meet that…this is a condition with gradual deterioration really and they could do with some help right from diagnosis really but you know parents can’t be expected to do it day in and day out and especially if they are a one parent family." Specialist Nurse

"A local respite facility, that I could definitely see would be fantastic for our survival as a family and I’ve noticed that I’m such a better mum when I’ve had a break from him … I can’t see me ever getting away from him until I’m fifty odd which is a horrible thought for me, it’s a bit of a crap life really particularly as you know, I know I’m going to loose him so I’m, I’m constantly torn" Parent

"I think to be able to offer parents respite in their home when they need it but also for some parents the respite has to be outside the home and allow them the opportunity to spend time with other siblings. I think it’s being able to recognise that you need both types of respite." Community Paediatric Nurse

"We had one little girl who was very ill and died by the age of seven and at that time her mum’s only network of support were the health professionals. She had spent so much time either at school or in the hospital that she had no friends beyond that world. Once her daughter had died and she had no contact so you know I think sometimes parents have enormous needs which are very very difficult to deal with, often on the bereavement side which are difficult to heal. We make one or two bereavement visits but after that's it." Paediatrician