Shining a light on the challenges for parents

Like everyone, we were saddened to hear the news that former Little Mix singer Jesy Nelson’s twin daughters Ocean and Story had been diagnosed with a rare, life-shortening condition.

‘I want to be a mum, I don’t want to be a nurse’

One of the many heartbreaking aspects of Jesy’s experience were her words, ‘I want to be a mum, I don’t want to be a nurse’, as she talked about the huge amount of medical equipment her daughters need, and all the training she’s received to care for their health condition. She voiced the harsh reality that all parents of children with complex and profound disabilities sadly face – that they become 24/7 nurses to their children, often with little chance of a break.

At Martin House, we support hundreds of families who find themselves in the same position as Jesy. They have to learn to use complicated medical equipment, like ventilators and suction tubes. They have to follow complex medicine regimes, with multiple medications to give their child day and night. Their children are often fed through gastrostomy tubes, so they have to manage giving multiple feeds throughout the day. They also suffer from disrupted nights, as their child may need machines to assist their breathing, or monitors that may go off at any time. They might wake in discomfort, or need repositioning – so parents often are functioning on very little sleep.

On top of this, they have all the admin of managing multiple hospital appointments with the different specialists involved in their child’s care – and they may well have other children to look after as well. It’s a relentless regime with no let up, which is why we want to shine a light on that.

How we support parents

It’s also so important to us to make sure they have access to support at places like Martin House, where they can get a break. Stays at Martin House gives parents time to rest and spend quality time as a family, instead of focusing on medical tasks. Parents often tell us they can ‘be mum and dad’ instead of a nurse when their child is at Martin House. In addition to short, planned breaks at the hospice, we can support families with Hospice @ Home visits – this could be taking over care to give parents time for themselves, or taking their child out to give parents a break. When children are unwell in hospital, our team can also visit, giving parents a break to eat, shower, see their other children.

On top of this, parents can always contact us for around-the-clock phone and medical support. Parents often tell us how reassuring it is to be able to call us whenever they need it, whether they need to consult one of our doctors at 3am because they are concerned about their child, or need some advice or reassurance. Even if they just need to talk to someone, families can call us at any time and talk to one of the clinical team for support – we are always here when they need us, and they know they are not alone.

Just like Jesy Nelson, no parent expects to have to take on the role of nurse to their child. But every day we see what an incredible job they do, to make sure their child is as well as they can be. It’s an honour for us to be there to support families when they need us most, and we’re only able to do that because of the generosity of our community, who help to fund our vital service.

You can find out more about how to support Martin House by visiting our website at www.martinhouse.org.uk

By Vicki Greensmith, Director of clinical services at Martin House.