HELPFUL INFORMATION
​Here are some helpful tips, information and products ideas we have gathered from BPAN families. We hope you find something useful and if you have a tip you would like to share to with other families please let us know!
Medical Care & Respite
I’m having concerns or disagreements with my child’s medical care. What can I do?
It is important that you feel heard and that your thoughts are taken into consideration as BPAN is so rare you will become an expert, not only about your child but the condition in general. There are many people out there to support you if have concerns.
Patient Advice and Liaison Service:
If you have a concern or complaint your hospital, the PALS department will be able to assist you.
BPAN specialists:
If you need information specific to BPAN or a letter of support, speak to your BPAN specialist that understands the condition.
Care coordinator:
Available through your local authority care coordinators can help you navigate the healthcare system to ensure you receive the right support and care at the right time. They work closely with patients, GPs and other health care professionals to identify needs, develop care plans, and connect patients with services that advocate for patients.
Personal experience – We value our Health Care Coordinator so much, she is an important asset that has helped with so many things from chasing thing up to letters of support she has always been a big help!
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How can I make sure myself and carers are trained to provide day to day and emergency care?
Feeling prepared when everything seems so unknown can be a big help so if you want to feel more prepared you can speak to your BPAN Specialists, local GP’s, Epilepsy Nurses or Community Nurses to see what training is available to you locally.
Personal experience - As a family we have attended CPR Training at the hospital. We have also received training with the Epilepsy Nurses for administering emergency meds (oral and rectal) and the Community Nurses for training to use the suction machine and administering oxygen.
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What are specialist Dentists and should I bother?
Specialist Dentists are for children and people with additional needs. They allow for longer appointments so they can take their time and can advise you on lots of helpful techniques if you’re having any issues such as tasteless non-foaming toothpaste, for those not a fan of regular toothpaste, or the best time to brush if you’re Bpanner can sometimes only manage once a day!
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Is there a best practice guide for BPAN?
Yes, This guide was created in 2021 by Drs specialising in BPAN from around the world you should give a copy to your child's Drs.
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How can I get help with respite?
Making time for self-care is important. Respite can also provide your loved one with access to new experiences and help grow their own social life and relationships.
Speak to your local authority to see what help is available to you.
Direct Payments Personal Assistant (PA) - Many people choose to have a PA that is funded by your the local authority.
There are many respite centres in the UK; either local GOV or charity's that offer day-care, overnight care and short breaks. These facilities often have tons of fun activities such as fun days, holiday theme parties and special events that are accessible with fun for all abilities.
Personal experience - One of our local respite centres is a charity called Demelza. When we were first offered a referral by the Epilepsy Nurses I was told it was a hospice so rejected the referral. However, a year later someone else told me about all of the lovely things they offer and it wasn’t just a hospice. It was more for respite, extra therapy and family time so I took the referral and I’m so glad that I did! We now enjoy hydro therapy, music therapy, home respite and all of the fun days they organise together as a family and I know they offer over night respite should I need them.
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Home & Equipment
Can I get help funding equipment not available on the NHS?
Yes, there are numerous charities in the UK that can help partially or fully fund specialist equipment not provided by the NHS.
This includes items like wheelchair add-ons such as power assists, Epilepsy alarms, specialist play equipment like bikes and trikes, specialist car seats, and travel beds.
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Personal experience - We received charity funding for a Carrot car seat, which provides excellent support the Carrot allows for a 5-point harness, spins for easy access, reclines, and even has a Velcro table for play during car rides! The application process was straightforward; we filled out the form and obtained a support letter from a physio, and within about six weeks, we had the seat.
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Can I get specialist home equipment from the NHS?
Yes, your local Health Occupational therapist (OT) and Physio will be able to asses you for specialist home equipment such as:
- Supported seating
- Walkers
Social care Occupational therapist provide different types of equipment such as comfy seating for Home Wedges that you can use to support your child sitting or sleeping.
- Specialist sleep safe bed
- Hoists
- Bath chairs
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Can I get help with adapting my house to make it more suitable?
Yes, your local authority will be able to help you with this. Social Services Disable services will be able to assess your family’s needs and apply for a Disabled Facilities Grant (DFG) to ensure you have suitable living conditions.
Personal experience - This has been great for us and our house is now ready for whatever the future may hold! Its worth speaking to them even if your still managing, these thing take time so check your local authorities waiting times and try not to leave it until things become to difficult!
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Can I get help with incontinence products?
Yes, you can apply for this service by completing a self referral to your local incontinence team.
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Local Services & Opportunities
REMAP
"Making things possible for the disabled"
They do this by making and adapting equipment to meet the unique needs of individuals at no cost to them. The equipment, produced by a team of dedicated volunteers, can help with day-to-day tasks such as mobility, personal care or eating. Or it can enable the client to pursue a hobby or ambition, such as participating in a sport or art activity.
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Information Advice and Support Services (IASS)
Your local Authority will have their own IASS That is there to help young people age 0-25 with lots of things such as EHCP's, Additional support at school, Help filling out forms or preparing for meetings and offering advice about the different services in your area.
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Local Offer
Every local Authority should have a local or equivalent where you can find a directory of inclusive support groups, events, and activity's.
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Emergency Carer Card
A card which has a registration number and a telephone number that can be called in an emergency situation. The carer carries the card at all times so that it can be used as an instant source of identification in case of accident or sudden illness.
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Riding for the Disabled
There are many disabled riding centres around the UK if your looking for a fun hobby that's also great exercise! many centres do have waiting lists so its worth getting your name on the list.
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Free Swimming
Your local authority run Leisure Centre may offer a disabled swim card (this allows for a free carer also) speak to your local leisure centre for how to apply.​
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Carers Concessions
Most attractions will offer a free carer admission with a disabled ticket. Depending on their rules you may need to show proof of DLA, carers allowance letter or Blue Badge (It's best to have a picture of these on your phone so you don't have to carry them around)​
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The information provided here is based on lived experience of the individuals involved. It is important to note that experiences may vary depending on location and local authority.
Useful Home Accessories & Products
​Dribble Bibs to Snoods!
It was a struggle to find nice big girl/adult bibs, the sizes were either massive or tiny and the patterns were sometimes a bit too wild to match with outfits! I was so happy when we found snoods they look like more of a style accessory than a dribble bib. They dry quickly and you can turn them around so you don't have to change them every 5 minutes!
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Wellie Boots
Welly boots made of foam! (Like a croc) they usually have EVA as the material in the description. These are super lightweight and they come with a sock in them so they're not slipping off or making her fall over. You can find them on Amazon.
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Soft Washable Bed Pads
These are great for if there are any accidents or leaks in the night! they are a soft material so no plastic crinkle noises and you can just throw them in the wash and reuse them. You can get them vat-free on incontinence sites and they are much more cost effective than the throwaways!
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Swim Floaties
We brought a lie-on floaty ring that clips up behind the back as our daughter was getting too big to put her legs through the holes of a baby one and she loved it! It was great because it was much easier to put her in and she would be in the correct swimming position so we could get her working her legs from behind for exercise. A company called LAYCOL sells them on Amazon but there are similar ones if you want to shop around. We have used it for three years and it's never needed replacing.
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Swim Nappy's
I wish I hadn't wasted my money for so long! The reusable swim shorts from Splash About are great and go all the way to adult sizes. I only found them when I really couldn’t find any swim nappies big enough to fit anymore, but I wish I had known about them earlier! She now wears her swim shorts/nappy with a zip-up swimming top, as she hates getting in and out of a costume anyway!
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The Honey Bear Straw Training Bottle
These bottles come with a stopper at the end of the straw and because they are squeezable so you can squeeze the juice up the straw until they learn to drink through it for themselves.
Personal Experience - Our daughter's therapist recommended we try this and it was the most success we've ever had with a straw! If you want to give them a try you can find them on Amazon.​​​​
Toys and Gifts
Every Christmas and birthday, family & friends want to know what to get for our child and at times, we're not even sure what we're going to buy! So, we thought it would be nice to share some of our best finds for our little ones.
We hope that you will also share your most loved gifts so we can share them with others!
I know I would love some more gift ideas :)
Peanut Ball - What a great gift this was, they are practically indestructible, great for exercise, and tonnes of fun! They are not very expensive and you can order them on Amazon.
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Ceiling Swing Chair - These are amazing! so much fun when you want to play but also for calming down and relaxing, you do need to have a load-bearing beam to attach them to but they're surprisingly not very expensive, Amazon sells them for about £40 and they would be a lovely main present.
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Malissa and Dough / Jaques London - They are great for the kind of open-ended play that helps build skills. Their products are mostly wood so very durable but also versatile for making up your own games so there's no right or wrong they can just do what they feel with them, I'm sure if you haven't heard of them yet you will find something they will enjoy playing with!
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Tomy Hide And Seek Squeek Eggs - They have a couple of different varieties like eggs in a box or Eggs on a bus! The opening and taking everything apart has always been very interesting!
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Ball (Smaller than a standard football not a tiny bouncy ball) - Our daughter loves playing with a ball! she can now catch a ball when we say 1, 2, 3 Catch! and can throw it back to us. She loves it and we are so proud of her progress! ​
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Galts Frog In a Box And Vtech pop-up honey bear - ​They are quite similar we first had with the frog in the box because it's easier to open then we've got the honey bear (This one has buttons to make the bear pop up) and these types of toys have been a firm favourite for years!
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Small Basketball Hoop - We have stuck it up with Velcro dot stickers I got from Amazon, We have one in our front room and one in the garden. It's a great game to play together we take the ball further and further away so she has to go further to put it in the hoop then we do a big celebration when she scores! ​​​