In an ideal world you would leave hospital with your baby (poorly or not), and the leaflets fall into your lap about support whether it be practical, emotional or financial. For me a lot of what I am about to share had to be found as I went along. Unfortunately there are disadvantages according to where you live in the UK, as to what access you have to some of them. That is why I felt it so important to keep the conversation going in the hope others will find out this information much quicker than I did.
This is a benefit available where you need to qualify according to a substantial list of criteria including being over 16 years old, caring for someone for at least 35 hours a week, and earning less than £128 a week after tax, expenses and national insurance. The government website below will take your through the criteria, but expect a number of weeks wait for the decision. This is particularly important for households that find they can’t work anymore, due to having sick children that are constantly in hospital and/or need medical cares carried out.
Personal independence payment
PIP (personal independence payment) is a benefit gradually replacing DLA (disability living allowance). This is a benefit that a person who requires support for cares and/or mobility can apply for. It can be accessed below for both children and adults again through the government website. The amount of benefit awarded is determined by the level of support you need. Varying needs include getting washed, dressed, needing help eating, walking and being at risk of danger in everyday situations.
Personal Independence Payment (PIP) enquiry line - 0800 121 4433
Children - https://www.gov.uk/disability-living-allowance-children
Adults - https://www.gov.uk/dla-disability-living-allowance-benefit
This is a free service providing advice and knowledge to all, whatever the problem. Being independent and impartial I have used them a few times when I am presented with a problem where I simply don’t know where to start. Driven by volunteers, they provide support online, in person conversation and on the phone appointments. I have always found their service excellent and leave conversations with a weight lifted or at the very least a clear direction of how to move forward.
National phone service: 0800 702 2020
Relay UK - if you can't hear or speak on the phone, you can type what you want to say: 18001 then 0800 144 8884
Eric - The Children’s Bowel and Bladder Charity
This national charity has been supporting children and teenagers with bowel and incontinence problems for over 20 years with the vision of “every child and teenager with a bowel or bladder condition can access support and live free from embarrassment, shame, isolation and fear”. There is such a stigma when it comes to talking about bowel conditions, we all need bowels and use them regularly making this particular charity so vital. The website provides videos and podcasts of support to health professionals, nurseries, schools and colleges as well as parents. Downloadable guides give in depth advice on topics from bedwetting, constipation, soiling and withholding. Also to be found are comic strips, crosswords and an interactive poo and wee game!
Freephone: 0808 1699 949 (open Monday-Thursday, 10am to 2pm)
Lots of videos to be found here for young kids to teens talking about your bowels and toileting with lots of helpful, nurturing advice
If your child is of school age its important to have good communication between your child’s teacher and members of staff in charge of care plans (if applicable ). I have always insisted on being updated on any changes of behaviour and routines which may show signs of a poorly tummy on its way. With my child it can go from 1-100 very quickly. We have a written record slip that is used to communication any changes. I use these as a record so that when we have a trip to the GP or hospital, I can share how they have been in school which can help inform diagnosis. I strongly recommend keeping a diary too.
Hygiene waste collection
Much like nappy collection services are provided for families with one or more children under three years of age, clinical waste collection is offered to households that have health conditions which as a result create clinical waste such as bodily fluids, anything containing blood, chemotherapy materials or stoma bags. Alarmingly only six councils in Wales offer this service. Check the government website below to see if yours provides this and if not ask for advise of how to dispose of this waste as an alternative.
Clinical waste collections phone line - 0300 1239208
Waistbands and support wear
Support wear is something my little one wears twenty four hours a day. It’s just like another piece of clothing to my son, like wearing a pair of socks! Having a feeding tube and a stoma bag, the waistbands we use provide support, softness against the skin, and most importantly give him security and confidence. I have been using Comfizz since Jake was born and have always shared how fantastic their products are (not gifted or sponsored at the time). Now I have a stoma bag and have taking up running I have started wearing the same, and know I am preventing myself from having a hernia whilst feeling secure and supported during my runs. In Wales we are entitled to six waistbands on prescription a year. Check with your GP surgery what you are entitled to.
At 18 months old my little one had gastrostomy surgery where a hole was made from outside of the tummy into the stomach wall, and a feeding tube put into place to allow artificial feed and medication to be directly fed into the stomach. He had his stoma bag from birth already, and one of the first things I was worried about was how I would dress him and be able to access the tube whilst keeping him comfortable and secure. I found this family run business based in Ireland who advertise a wide range of clothing for additional needs children ranging from baby grows to jeans and joggers. Great prices and one of the best range of choices for adaptive clothing I had seen.
As with any support for additional and/or medical needs it is nothing to be ashamed of. If you qualify for any of the support outlined above apply for it. You have nothing to loose and potential a lot to gain. It can help take the strain off everyday life and give you the mental space to focus on other things. Having a baby in particular that makes it impossible to return to work can be crippling for parents. The support is there and I know if I had been made aware of it, live would of been that much easier.
Take care, Rach x
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