Why do less adults use orthoses than children?

lucybest

Great to hear that you have finally found some AFOs that suit you finally. It sounds like you had quite a journey to get there! Well done for persevering!
Also great to hear that you find the compression shorts and lycra breeches help. They may be enough but if  you feel you need more support/control, you can ask your local NHS orthotic service if they provide custom lycra garments (also called DEFO = dynamic elastomeric fabric  orthoses) for adult CP (hopefully they do). If they do,  you can ask your GP to refer you. Not only will the garment be made to measure to fit your body shape, it will also have firmer bands to control your joints in whatever way is needed. There is an option of being open at the crotch so that  you don't need to struggle to take them down every time you go to the loo and you can have zips and hooks too. If you need to go privately, the companies that make the garments can tell you the providers nearest to you.
DMorthotics https://www.dmorthotics.com/
Jobskin SDO® Sensory Dynamic Orthosis Dynamic Lycra® Compression (jobskin.co.uk)
AllardDynamic Textile Orthoses | Allard UK

Good luck and thanks for sharing your story,

Lucy (orthotist)

niceboots

Hi Lucy thanks for the info! I’m familiar with allard as I wear allard blue rocker afos. I’ll have a chat with my physio and see what she thinks as a more user friendly pair of shorts may be handy! 

Stayce

Hi @lucybest

Lycra garments have only really been available on the NHS for just over 10 years, so you will find your question about wearing as a child and stopping is going to be skewed somewhat 

The benefits of wearing lycra garments are essentially they help lower high muscle tone and give awareness of the affected limbs to the user, thus also improving posture and core stability. There are no real problems with these orthotics.

They need washing every two days and replacing annually as the elasticity decreases with time, making them less effective 

The NICE guidance has not made it easier at all. It has had no impact whatsoever, everything an adult with CP is entitled to is a struggle to get and as @niceboots mentions it really is hit and miss in terms of the quality and experience of the orthotist to deal with CP orthotic provision correctly, like @niceboots  I work in healthcare too and in my experience very few orthotists understand about tonal issues and the effects orthotic devices can have on that nor do they know enough about total body alignment and what offloading in one place can do to somewhere else in the body.  Sorry if a tad depressing, but sadly true.

lucybest

Thanks Stayce for  your reply. Yes, getting the balance right with CP bracing is incredibly difficult and needs a lot of time and patience for both the clinician and patient. Unfortunately, most NHS orthotists have very little time per patient. Usually there is not just one solution and different levels of control are needed for different situations, varying between no control (accommodative only), partial control and full control  - for example for stay at home days, going on walks,  playing sports or whatever, good days, tired days etc. You can explore options and see what works for you in a private clinic and then try and get the things that work for you to be supplied by the NHS. If you have an example of something that works and you can explain why it benefits you then you can ask your GP to prescribe the item and refer you to NHS orthotics.
With the lycra garments, they are often worn next to the skin and if they are tight into the arm pits and/or groin I advise that a fresh one is put on daily. However, this does then require several garments so that they can be washed and dried (drying should not be in a tumble dryer or on a radiator).
In terms of the difference between children and adults, the children with CP usually have a lot of physio input, so they are getting regular stretches and exercise programmes and the physio is checking the fit of the braces/lycra/boots and arranging replacements with the orthotist when needed. Once the patient leaves the paediatric service, they are basically on their own. Without that input,  the muscles and joints suffer and perhaps the braces become more uncomfortable and effective which is why people stop wearing them.

Stayce

Hi Lucy

Unfortunately particularly in a cost of living crisis it is not possible for many people to go private for orthotics, also if they are not made correctly first time, which as you point out isn’t easy that is even more cost incurred by the patient. 

It is a real shame that going private is seen as the solution to many NHS orthotic services that are  just not geared up for Cerebral Palsy patients and in my experience are handing out items that actually make things worse. I’m sorry more time needs to be given to people with CP, and other complex cases, in orthotic clinics, we all know the pressures on services are hard, but as someone with CP we get the rough deal all time with things like this and it isn’t good enough. Orthotic services need to improve 

I answered your questions about lycra garments as someone who wears them myself, so those are my washing times etc.

I think you may misunderstand my point about the did you get lycra garments as a child and stop as an adult. If they have only been on the NHS for 10 years then the majority (not all) that are responding to this will have been an adult or teenager when supplied with them and therefore the child v adult compliance becomes less relevant/redundant 

lucybest

Hi Stayce,

Yes, I totally agree that the NHS orthotics service should be far better. Many reports have been commissioned over the years to highlight the problems and give recommendations on what is needed.

In 2004 there was the Orthotic Pathfinder report which was very comprehensive 
https://www.researchgate.net/publication/230819236_Orthotic_Pathfinder_Report/link/552be0220cf2e089a3aaaf1e/download

With the service still being very poor  a patient campaign was set up

http://www.orthoticscampaign.org.uk/campaignhome.html

In 2015 another big study was done

https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/11/orthcs-final-rep.pdf
(this also highlighted some centres where there was good service)

Unfortunately there are still problems.

in the UK there are about 2 million orthotic users and only about 500 orthotists.

In comparison, the NHS prosthetic service is far better (about 45,000 prosthetic users and about 500 prosthetists). The difference in service compared to orthotics is huge.

I used to be an NHS prosthetist and we would have only a few patients a day to see, there would be no problem to supply prosthetic limbs costing £1000s each, often a spare leg was given to allow swimming or another activity. We had onsite workshop and technicians  and the clinic team (consultant, physio, nurse, psychologist, nurse, occupational therapist, prosthetist) would regularly meet to discuss the care for each patient. The prosthetist would be totally in charge of the shaping of the interface between prosthetic limb and the body, the clinic rooms were spacious with parallel bars and space to watch the patients walking up and down. 

Then I worked in Switzerland where I did prosthetics and orthotics and the service was pretty good and the orthotics we did was just the complex cases (simple brace supply was someone else's job). We would have enough time and would be manufacturing the devices as well as fitting them.

After I was teaching prosthetics and orthotics in Laos.

When I came back to the UK, I worked in the NHS as a locum  orthotist. In most of the centres I was shocked at what we were supposed to do - see far too many patients and mostly it was to supply off the shelf braces. When a patient with more complex needs needed a bespoke brace, it was very difficult because there was no access to a decent/any workshop, no access to a place or time to "rectify casts" which meant I did not have full control of  the fit of the devices, the contact with the rest of the clinic team was minimal, the clinic space was inadequate to watch the patients walking. Even for the off the shelf braces, if I wanted to supply a  brace that was more than a few £s I would need to make a lengthy case report of why it was needed. If a patient came that needed more than was written on the prescription, I couldn't supply it without the patient needing to go back to the GP or consultant for another referral which wastes everyone's time. Getting custom footwear to fit properly and looking "normal" was very difficult. In short I could not give the patients the best of my ability which I did not like at all and I didn't want to continue with this.  I did not have the capacity to try and change the system within as I was a mum with small kids. I lived too far away from prosthetic centres so couldn't go back to being an NHS prosthetist and lived too far from good orthotic centres. This is why I set up my own private orthotic practice. Patients can then spend time with me to explore what works for them and then go  back to the NHS orthotists to show them/the GP/the hospital managers, and request the same. Hopefully bit by bit this will help improve the NHS orthotic service for all users.

The good news is that more orthotists are being trained and there are now apprenticeships being set up to give another route into the profession.
https://www.hee.nhs.uk/sites/default/files/documents/The future of the prosthetic and orthotic workforce in England - one year on.pdf

As users, if any of you has the time and energy to campaign for a better NHS orthotic service you could contact the orthotics campaign. I am sure they would welcome your help. http://www.orthoticscampaign.org.uk/campaignhome.html

Re the 10 years of lycra - yes, good point, many on here will not have been a child when they were first introduced. Maybe there are some young adults on this forum who the question would apply to.