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St James Centre
344 Laird Street
CH41 7AL
Tel: 0151 522 7990
Fax: 0151 670 1600
Minicom: 0151 653 3230

Company No: 2997803
Charity No: 1060105

Who is a parent carer?

Workers in ‘Serviceland’ often ask:

Where are the parents?

They are on the phone to the doctors and hospitals, wading through the red tape in order that their child’s medical needs can be properly addressed.

They are buried under a mountain of paperwork trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

They are at home, putting nappies on their 15 year old son, or trying to lift their 100lb daughter onto the toilet.

They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a tube. They are administering medication, changing catheters and switching oxygen tanks.

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for test results to come back, and wondering: is this the time when my child doesn’t pull through?

They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. Grateful for the hospital allowing them to sleep on the floor on a mattress.

They are worried about their other children who are at home and have needs of their own.

They are worried about the weeks of recovery when they will have to support their child alone at home with no equipment.

They are sleeping in shifts because their child won’t sleep more than 2/3 hours a night and must constantly be watched lest s/he do harm to themselves or another member of their family.

They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cutbacks of their own.

They are trying to spend time with their children who don’t have disabilities as they try to make up for the extra time and effort that is critical to keeping their child alive.

They are struggling to keep a marriage together because adversity does not always bring you closer.

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy trying to survive.



Yes, there’s no denying it is hard work and at times can be difficult, but there are organisations, both voluntary and statutory, which have people who are able to offer support. The only thing is, you have to recognise what you need support with and what it looks like- not just what is available. The only person who can do this is you.

Recognising you need support is not the same as saying you are a bad parent, can’t cope or don’t love your child. It is about doing your best for your child and yourself.


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Updated April 2015