Anne's story: fighting for her daughter

Anne cares for her 16 year old daughter, Paula, who has “Deletion syndrome.” This means she suffers mental health issues and physical disabilities. She has also had a cancerous tumour.

As a tiny baby, Paula was diagnosed with “Deletion syndrome.” It is a rare syndrome and so there were no organisations or support groups with specific knowledge that Anne could turn to for advice and no guidelines to help her.

In addition, Paula has had a cancerous tumour, meningitis, pneumonia and a number of other medical problems. She cannot do anything for herself and has to be tube fed four to five times a day. Paula also has epilepsy and some of her seizures affect her breathing and Anne has to do emergency CPR to assist her.

Paula sleeps upstairs so that Anne can be near her. Anne wants to be able to hear her breathing as if she has any problems; she needs to get to her quickly. As a result of her caring role Anne now suffers from a bad back, although her husband carries Paula from room to room and in and out of her wheelchair.

Anne had to give up work when her daughter was diagnosed with the syndrome and tumour, because of the hospital appointments and level of care that were needed.

Since her needs are complex, Paula was excluded from full time education when she turned 16. The special needs education facility she attended does not have a trained nurse available for this age group, 16-19, although this is not necessarily the case in other parts of the country.

Anne strongly feels that her daughter, and others like her, should not be excluded in this way. She is adamant that Paula deserves and is entitled to a full education. With the support of North Tyneside Carers Centre and her local MP, she is fighting for her daughter to get that education.

Although Anne and her husband have a very strong relationship, they never have a night out together, other than a special occasion, as Paula’s needs have to come first. Despite this, Anne has never felt resentful, explaining: "She didn’t ask to be born and she’ll always come first. I’d die for her. I only wish she could walk – that’s my dream."

They have some respite and the level of care is excellent. The child/carer ratio is very high, plus trained nurses go into the respite twice nightly to feed and medicate Paula. But, like all special needs parents, one of their main worries is what will happen to their daughter if they are unable to look after her in the future.

The special needs school first told Anne about her local Carers' Centre and Anne found them easy to call and non-judgmental. Over the last 10 years her centre has provided 'immeasurable help'. As well as emotional support, provision of a support worker and counseling, Anne has also had the chance to attend courses in confidence and developing assertiveness and go on pamper days for relaxation. These let her leave her troubles behind and means she can be part of a group and not feel so alone in her situation.

Most importantly for Anne the centre is also supporting her in the fight for Paula’s education. She says the centre is helping her fight her corner 'like a modern day Robin Hood'!