John is a 15 year old boy from Uganda who has cerebral palsy. He is wheelchair dependent, tube fed, and unable to move himself. He only has a little active movement in his arms. He needs full care and has lived at a children’s centre called New Hope Uganda since he was a young baby. The special needs project “Treasures in Jars of Clay” started in 2009 when Kate Tolhurst, a British special needs teacher, went out to Uganda to care for John. Sadly, in the early years, John’s tone and spasms were very difficult to manage, and he has long-term contractures in both his arms and legs. These have got worse over time, and John has also developed a scoliosis of his spine and windsweeping of his hips. For the last 6 months, John has been in a lot of pain, especially with one of his hips.
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My son, Jason, is now nearly 19 years old and I have been using the Symmetrikit Sleep System for him since 2000. Jason has severe Cerebral Palsy with associated Scoliosis and Kyphosis, muscle spasms, bi-lateral hip dislocation and he also has complex health needs. He suffers a great deal of pain and is frequently distressed during the day and night.
The sleep system has been the one piece of postural equipment that we have been able to use for him whether he is settled or distressed, well or unwell. No other piece of equipment has given us that flexibility. He has always reacted adversely to being 'held' in position in equipment that is not comfortable, and therefore the use of it ends up being counter productive. He becomes more tense and more distressed the longer he is in it. This has never been the case with the sleep system. Due to the deeply padded Airmantle mattress and also pads covering the brackets, his comfort is maintained, tension is eradicated and yet he is held in the correct posture for him.
Jason also has problems regulating his temperature due to his condition and some of his medications. The Airmantle mattress and also the Coolover fabric that is used for all of his sheets and cushions has helped tremendously with this problem. He can get very hot in some other pieces of equipment and become very upset as a result.
The sleep system has been extremely easy piece of postural equipment to use, which is essential when numerous different carers are using it. The plastic sticker chart that is supplied with the system, which shows the position of my son's brackets and cushions, makes it straightforward for any carer to position my son correctly. This is so important when the brackets and cushions are removed so frequently for personal care.
Constant moving and handling issues has inevitably put my back under considerable strain over the years. Being able to utilise the hoist, along with the sleep system, to put Jason in a side lying position has helped to lessen my back pain. It also means that carers are able to turn him on their own, without needing a second carer to assist them. A real bonus when budgets are tight!
I can honestly say that the Symmetrikit Sleep System has been the best piece of postural equipment that we have ever had for Jason, without exception. It is comfortable for him, it helps to maintain his posture and it is also very easy to use. Whether it is being used overnight for sleep or during the day when he is unwell, or just wants to chill in his bed like all teenagers do, it provides for all of his postural needs. Thank you for such an amazing piece of equipment!
Kay is a 55 year old lady, who has progressive MS. Prior to her admission to Kingly Care Partnership she had been totally bed bound for a period of 18 months as a result of significant postural deterioration due to alterations in muscle tone, contractures and previous hip fracture. She lay in a position of significant lateral flexion, kyphosis, rotation, fixed flexion of one leg and extension of the other which resulted in her legs being rigidly crossed and contracted into an oblique position. On admission to Kingly Care Partnership and following immediate assessment, it became clear that this physical fixed position had extensive impact on Kay’s level of pain and discomfort, ability to functionally engage due to limited movement of the upper limbs and an inability to gain a seated position. It also made meeting Kay’s needs in regards to personal hygiene and pressure management extremely challenging. Kay struggled to tolerate regular physiotherapy due to her mental health needs and therefore it was considered that a sleep system may be more appropriate. A Symmetrisleep system was provided to be used by individually trained rehab support workers and overseen on a daily basis by the OT team.
Kay has now been using her sleep system for just over 1 year and the positive impact has been notable and remarkable. She is no longer restrained by her fixed and ridged body positioning; meaning that her natural supine position is far more aligned, supported by more normal muscle tone and a significant reduction in enduring discomfort. She is able to manoeuvre her own body position when in lying to some degree and has regained functional use of her right arm, over the last 12 months, which was previously trapped by her body’s position, allowing her to eat and drink independently and participate in painting which she has always enjoyed.
She has gained enough passive movement to be able to achieve a seated position and as such is able to sit in a custom moulded wheelchair. This means that she is no longer bed bound and can now engage in a more normalised daily routine, dictated by her own choices; which include regular visits to her family’s homes, going out to shop and for her favourite costa coffee. Her lower limbs no longer cross allowing for personal hygiene to be far more easily maintained and previously vulnerable areas of skin no longer have any issues. Recently Kay’s movement was noted to have improved so much that a review of the sleep system took place and level of support in place has been reduced with a new goal set to work on ankle movement. It is clear that alongside a full range of therapeutic approaches to manage Kay’s global needs the SymmetriSleep has been a key and essential aspect of her physical rehabilitation.
Other Symmetrisleep Feedback
“Muscle Relaxants- we have not used these for a long time since we started using the dynamic orthoses (Symmetrisleep)”
“If a demand comes in for pain medication, we first look if the lying orthosis (Symmetrisleep) can change and solve the problem.”
“The pain medication is significantly lower since we used the dynamic orthosis.”
“The impact on K’s life has been dramatic. This system is used as part of our 24 hour approach to her postural management, good alignment and support at night is helping to maintain the range in her hips. The improved hip position is preventing her from becoming twisted in her trunk which enables her to bring her arms and hands down by her side when she relaxes and sleeps instead of up and around her head. She now has a decreased risk of contractures and hip dislocations and the overall picture is a happy, energetic young lady throughout the day. Excellent outcome to a challenging situation!”
“M no longer woke frequently during the night and did not moan and groan in discomfort in the early morning.”
“M was sleeping well and had to be woken by staff to get up. He was much more alert and happier during the day and staff reported that he was less stiff and thus transfers were much easier.”
“The degree of flexion in his hips and knees was reduced. He was sleeping well and was much more relaxed during the day. Accompanying changes had taken place with his seating insert as he was now able to weight bear symmetrically and required a less complex seating cushion. Staff found it much easier to perform personal care and transfers.”