Conditions

Tŷ Hafan includes children and young people who will die prematurely as a result of the life-limiting condition or a cluster of symptoms that impact on life longevity. Some will have lived with these conditions since birth or early childhood, when others may have only been affected since their teens. In some conditions, the child or young person will remain mentally alert. In others there is a progressive intellectual deterioration.

The life-limited children to whom Tŷ Hafan provides palliative care services suffer from a broad range of conditions, including:

• rare genetic disorders

• congenital abnormalities

• progressive neurological conditions

• clusters of symptoms as yet undiagnosed

• irreversible organ failure

• Cystic Fibrosis

• Duchenne Muscular Dystrophy

• Battens Disease

• Mucopolysaccharidosis

• severe Cerebral Palsy

• children with multiple disabilities

• Tŷ Hafan also cares for children with cancer where

the child is no longer responding to treatment

Diagnosis is only part of the process, the spectrum of disease, severity of disease and subsequent complications and the impact on the child and family needs to be taken into account. Most will fall into one of the following curative and palliative groups:
(based on ACT and RCPCH 1997)  

Key

Curative   Palliative

Category 1

Life-threatening conditions for which curative treatment may be feasible but can fail. Where access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of that threat to life. On reaching long-term remission or following successful curative treatment there is no longer a need for palliative care services.

Examples: cancer, irreversible organ failures of heart, liver, kidney.

As the illness progresses the emphasis gradually shifts from curative to palliative treatment.

Category 2

Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities.

Examples: cystic fibrosis, Duchenne muscular dystrophy.

Highly technical invasive treatments may be used both to prolong life and improve quality alongside palliative care, each becoming dominant at different stages of the disease.

Category 3

Progressive conditions without curative treatment options, where treatment is exclusively palliative and may commonly extend over many years.

Examples: Batten disease, mucopolysaccharidoses.

No cure is possible and care is palliative from the time of diagnosis.

 

Category 4

Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death.

Examples: severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury, complex health care needs and a high risk of an unpredictable life-threatening event or episode.

At first it is not apparent that this will be a terminal illness and palliative care starts suddenly once that realisation dawns.

 

If you are uncertain whether or not a child is eligible, please call us on 029 2053 2200. For example, we recognise some non-progressive conditions (such as Cerebral Palsy) as life-limiting. These children and young persons might well meet our referral criteria.