The East Sussex NHS recently cut down the number of free incontinence pads for young people from 5 a day to 3.
These new guidelines have led many parents of disabled children to stand up and protest against the new decision. One angry mother asserts that her children have been robbed of “basic human rights” by the NHS’ cutting down their daily allowance of free incontinence pads.” Jackie Hoadley, 57, told Metro.co.uk that it now costs her £1,600 a year to keep her children clean and protected. She cares for two disabled children, Mathew and Ellie, who both suffer from brain damage, epilepsy and double incontinence.
Not using the vital number of incontinence products can lead to skin irritation and conditions such as incontinence associated dermatitis. Jackie asserts that this has been an ongoing problem for her son Mathew, when his pads aren’t changed frequently enough. She states, “Mathew’s skin is prone to breaking down if you don’t change his pads enough”. It is also a source of humiliation and lack of social acceptance, particularly when accidents occur in a public place. She continues, “it is abuse, because if we left our children wet and they got sores, social services would be coming over, knocking on the door and asking why we haven’t changed our child”.
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“It’s another thing that people with disabilities have to fight for, which we shouldn’t be doing”
Jackie argues that the limitation of pads removes basic human rights from those with disabilities. She explains, “if you’ve been to the toilet three times in a day, it’s basically saying you can’t go again. That’s not right, it’s against human rights”. When she first complained about the new rules to the Head of Services at East Sussex Healthcare NHS Trust, she was told there was “nothing they could do to help.”
Jackie has started a change.org petition asking the East Sussex Local Health Authority to ensure all those with disabilities are given as many incontinence pads as they need. The petition has gone viral and stands at 75,000 signatures.
In response, the East Sussex NHS Trust stated, “we know these products are important to families but these changes will mean that we can continue to provide a service that is high quality and cost effective. The changes are being monitored and we continue to engage with families affected, so we provide the best possible care to children.” The statement also said "families in East Sussex have an option to “make easy top-up payments with the same provider that ESHT use. This includes a discount compared to purchasing products elsewhere as well as direct deliveries.”
In response to the petition and high number of complaints, Jackie explains she has now received a revised statement from the NHS. The new letter explains, “those families in receipt of continuing health care needing more than three incontinence products a day will receive them”. Jackie and other residents have expressed concerns about this response. Jackie asserts, “I don’t think the revised statement goes far enough, and that’s because while Mathew may now be entitled to five pads a day his sister Ellie won’t be because she is not on continuing health care.” Jackie believes that she and the hundreds of parents like her still have a battle to fight.”
In addition to Jackie’s viral petition, Eastbourne Mum Linda Potter also has contacted the media stating she feels her daughter Nina is being put at risk by these new restrictions. She stated, “you have fight after fight when you have a disabled child. If we don’t fight for it my daughter’s not in a position where she could fight for herself”.
Improving support for young people with incontinence is an issue that is constantly in discussion. Earlier this year, the BBC published an article addressing how older children in schools with incontinence are not provided with enough support. This problem is thought to be due to a lack of funding, staff and support. Sally Holland, Children’s Commissioner for Wales, stated “incontinence is not just a home issue. It is a problem wherever that child goes.” Research found that teenagers with incontinence are at greater risk of underachieving academically, with more support needed to remove academic barriers.
If you or someone in your family has bladder or bowel problems, you can visit our living with incontinence section for tips and advice. If you are struggling to care for someone with disabilities and incontinence, you can ring the Carers UK Helpline on 0800 055 6112.
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Originally posted 2019-08-13 13:45:14.