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Making the transition from children’s to adult services

This panel session, filmed at the Cerebral Scotland Conference 2018, provides information and personal experiences on making the transition from children’s to adult services.

The session was moderated by advocate and YouTuber Jenny Trott, who is also the parent of a young person who lives with a disability. Jenny’s YouTube channel is packed with useful videos covering topics from exploring communication aids to advice for how to plan for a caregiver emergency.

Panel contributors on the day were: Gavin Drysdale, a student and athlete about to make the transition into adult services, and Dr Danielle Farrel, managind director of Your Options Understood (YOU), a community interest company providing advocacy, consultancy and training on the self-directed support process. The third panel member was Claire O’Neill, advanced nurse practitioner and founder parent of Bobath Scotland, whose 25-year old son lives with cerebral palsy and made a positive transition into adult services.

Cerebral Palsy Scotland Conference biggest and best yet!

Held on 4 October at Hampden Park, the fifth annual Cerebral Palsy Scotland Conference and Exhibition was a great success, bringing together around 200 delegates and 40 exhibitors.

Organised by Bobath Scotland and supported by Digby Brown Solicitors, the conference is Scotland’s only event focussing on cerebral palsy (CP) and aims to bring together all people with experience of CP – either directly, through family or professionally.

Delegates heard from a diverse range of speakers, including Richard Davenport, Chair of the National Advisory Committee for Neurological Conditions and Dr Jenny Preston MBE, Clinical Lead for Neurological Rehabilitation in NHS Ayrshire & Arran.

Workshops on the day covered topics including mental health and CP, making the transition from children’s to adult services, self-directed support, postural care, Bobath therapy, Selective Dorsal Rhizotomy (SDR) and Augmentative and Alternative Communication (AAC).

The exhibition area was very popular with delegates, showcasing 40 organisations providing specialist equipment and a range of services that support people with CP.

Commenting on the conference, Stephanie Fraser, Bobath Scotland CEO said:

“Bobath Scotland is determined to make the lives of those living with cerebral palsy better. Delivering the annual Cerebral Palsy Scotland Conference is just one of the ways we do this, alongside providing a range of services including specialist therapy, running groups and events, and working for changes in policy.

“This was the fifth Cerebral Palsy Scotland Conference that Digby Brown and Bobath Scotland have organised together and we were delighted to attract more delegates and exhibitors to the event this year than ever before. The conference is unique in Scotland in bringing together the whole CP community and it provides a valuable opportunity to network, discuss key issues and find out about relevant services and organisations.

“There was a really positive atmosphere at the event with many valuable conversations and discussions taking place throughout the day. We are very grateful to Digby Brown Solicitors for continuing to support this fantastic conference.”

Highlights from the day were captured in this short film, put together by conference contributor and vlogger Jenny Trott.

To keep in touch with news of upcoming Bobath Scotland events and our other services, please sign up for email updates.

What’s a Neater Eater?

In the first of a series of equipment reviews, blogger Bernie tells us about the Neater Eater

The Neater Eater is an aid to assist me when I am eating, it is a piece of equipment that attaches onto a standard table, with it’s own plate and spoon which attaches onto a bar and this moves up, down, back and forward- this is how you control the spoon, it has also got grips on the bar and this makes it easy to hold.

There are two versions of the Neater Eater… a manual or electric version. The electric one is for people who are not able to use their arm to physically hold the Neater Eater’s bar to control it down to pick up the food then up to their mouth. This one can be programed for the times at the rate that the person eats at, it is usually operated by a button but it can adapted to be operated by switches. The manual one is not electric and you need to use your hand to use it to operate the Neater Eater which I can to do.

I have Cerebral Palsy which effects my movement, I find it very challenging to eat certain types of food by myself especially liquid foods like- cereal, soups, beans, peas, noodles and yogurts. All foods that require you to eat with a spoon, I can’t physically get these onto a spoon and into my mouth without dropping the food. This is because of my involuntary movement, so I have had help from family members, who I feel comfortable with, assisting me at meal times for most of my life.

In 2017, is when one of my family members found out about the Neater Eater and we looked into it. I got in touch with my O.T department and an O.T came out to my house and assessed me. The next step was to request a home visit from the company to assess me and to demonstrate the Neater Eater…this was to see if I would benefit from having one of my own and also to see what type of Neater Eater that would be suitable for my needs…the electric or manual one. The process of the order took a few weeks as funding has got to be sorted out but it was definitely worth the wait.

Once the piece of equipment is set up by the company, to best suit people’s individual needs. It is ready to use. As I have said, I have the manual version of the Neater Eater. To operate it all I have to do is put my hand on the bar which has grips on it which secures my hand and the spoon is attached onto this part, I lower the bar down until it reaches the plate, I pull the bar forward in order to get the food onto the spoon and then you have the option of keeping your hand on the bar or taking you hand off as it has springs built into the movement of it, meaning that the bar comes back up automatically to the level that my mouth is at and then all I have to do is pull the bar forward, towards me and take the food off of the spoon. You just repeat these steps up until you are about to finish, the plate spins round and I use my other hand to spin it round while holding the bar down in order to get the food that is round the edges of the plate. There are also other types of accessories such as cutlery – spoon or fork that you can get for the Neater Eater. I personally just use the one spoon and plate for all foods as I can manage but other people might prefer to change the spoon or plate, depending on the type of food that they are having.

Overall, the Neater Eater has made a big difference to me, it has given me independence at meal times, I don’t need any assistance with liquid foods anymore…I have more of a choice of foods now whereas before, I always had to pick the easy option like solid foods that don’t require you to eat with a spoon. It’s amazing how my movements does not affect how the Neater Eater operates.. No matter how much I move, the bar and spoon stays in the set position.

I have to put so much more effort into doing tasks as my muscle tone tenses up when I’m concentrating on something, this makes me really tired as I am putting a lot of energy into it and before I got the Neater Eater I often felt tired after eating foods that I needed a spoon for, even know I had assistance at meal times- I still tried to do as much as I could myself. Now I have got the Neater Eater, I don’t have to put just as much energy into it- making me enjoy my meals more.

Check out my demonstration of the Neater Eater here: https://youtu.be/S6HYyDMdF6I

To find out more about the Neater Eater go to the following website: http://www.neater.co.uk/neater-eater/

Bernie’s top equipment and gadgets – eating and drinking

Neater Eater

This piece of equipment allows me to feed myself, using a spoon. I have Cerebral Palsy so controlling my movements can be difficult but this feeding aid really makes a difference to my daily life, read my blog about the Neater Eater for a more detailed explanation of the aid.

Plastic Cutlery

As I have sudden hand movements because of my Cerebral Palsy, I am not able to use metal cutlery. If I was to move the wrong way while using metal cutlery, I could hurt my mouth. I can feed myself with certain foods so I use plastic cutlery, which I feel more confident using as I know that if I was to move I couldn’t hurt myself. The plastic cutlery comes in a pack with forks, knifes and spoons (6 of each), they are a bit thicker which makes it easier to hold and they come in light colours too- grey turquoise and pink. Where to purchase the plastic cutlery – Ikea, in the cutlery section of the store, or alternatively online.

Plate Guard

This is a plastic guard that fits tightly around the rim of any plate, it fits on a smaller size of plate better. The plate guard is curved and it prevents food from falling off of the plate. The aid acts as a barrier too, you can push the food against it while you scoop your food onto a fork or spoon and it works better with certain foods such as mashed potatoes. It really helps people who only can use one hand as you don’t have to hold another piece of cutlery in order to get the food on the spoon. The plate guard clips securely onto the edge of a standard plate and it is easy to get on and off. The product can be purchased from the following website.

Dycem

This is a non-slip mat, it is a rubber texture, that is designed to grip and hold things still. Dycem prevents most things from slipping and is really helpful to people who have Cerebral Palsy. It can be even more challenging if items are moving about while you are trying so hard to do a task. Dycem stops movement and this makes life a lot easier. The mat works best on hard surfaces and needs to be totally dry in order for it to grip items. I use Dycem daily to help keeps things steady- at meals times to hold the plate, using my roller ball mouse when I am on a computer, writing and drawing- Dycem can grip paper and many other items. This aid is essential to me and I properly wouldn’t be able to do tasks without the non-slip mat as it would be a real struggle for me. The Dycem product can be purchased online.

Safe-Sip

This is a silicone drinks cover that fits over cups, glasses and cans. It basically stops your drink from spilling even if you accidentally knock it over or find it difficult to hold a cup or glass still, like myself. The Safe-Sip cover prevents any leaks. It really is an amazing aid that allows me to drink out of a cup or glass independently and I don’t have the worry about it spilling. The covers are easy to put on and off although you have to be careful as the silicone can rip easily. In order for the covers to grip onto cups or glasses, they both need to be completely dry. Another point about the covers is that they hold straws in place….there is nothing worse than having a straw moving about while you are trying to have a drink. This product has made a big difference to me, I now can have my tea out of a mug whereas before I had to use a plastic bottle with a straw so I love the drink covers and I would highly recommend the product to anyone. Visit Safe-Sip’s website to purchase a pack.

Bernie’s top equipment and gadgets – wheelchair accessories

In the third of her equipment review blogs, Bernie Hunter provides a round-up of top accessories for wheelchairs.

Cup Holder

This is to carry my drink, the cup holder attaches onto my wheelchair and this allows me to take my drink out with me. I don’t understand why wheelchairs do not have cup holders already fitted onto them. It is a very useful accessory to have as I can easily access my drink and I don’t need any assistance to get it out of my bag, if it is a bottle of juice. The bottle just fits in the cup holder and I can take a drink when I want, the cup holder has a hook so it is hooked over my arm rest of the wheelchair and taped on just to make sure it is secure. It does make my chair a little wider but it just depends where the cup holder can be fitted onto the wheelchair. I got the cup holder from a hardware shop but there is a range online under ‘Car Cup Holder’. Here is a car cup holder which is available to purchase on ebay.

Net Bag

This is a bag which is made out of fabric, that attaches onto the handles of my wheelchair. It is very lightweight and it doesn’t stop you from putting any other bags on the back of the chair. The net bag is for to put lightweight items in like essentials and snacks, it saves you from having to take another bag out with you and it means that there is one less bag to carry about. The only thing about this bag is because it is clipped onto my wheelchair permanently which means I can’t access it independently but it is still very useful and I highly recommend it for anyone who uses a wheelchair- the net bag is available to order on this website.

Clutch Bag

This is a small bag with a wrist strap that attaches onto my belt, on my wheelchair, which means the bag is secure and can’t fall off. I use the bag to put my phone and money in as it is safe and I can easily access it myself. The bag has a zip and I have a keyring on it, this makes it easier for me to open and close it. The bag helps me to be more independent and I don’t have to worry about carrying my money or phone about with me. Clutch bags are available in stores like Primark, New Look or alternatively online by searching for “Clutch Bag”.