Orthotics

Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.

Nicci is based at Westminster and Chelsea NHS Trust. She works for Opcare which is one of the biggest NHS providers of orthotic, prosthetics and wheelchair services. Opcare pride themselves on being innovative and at the forefront in patient care. Opcare’s mission statement is ‘Our mission is to provide professional services in a caring and informative manner. We seek to continually develop our understanding of the needs of each individual user and apply our knowledge to optimise their quality of life’.

Like most people, I had a plan. I knew exactly what I wanted to do with my career, then I was diagnosed with EDS at the age of 22. After navigating the twists and turns of diagnoses and the constant comorbidities that arise from my EDS, I soon came to realise that there were many medical fields that lacked knowledge or experience with EDS.

In addition, I also realised orthotics play a huge part in every patient’s journey, but particularly within EDS. I realised that every person with EDS will visit an orthotist clinic room at some point. Whether that clinic room visit would be a knowledgeable one (back then), was few and far between. I also found out that there was no EDS specialist within orthotics.

So, many years ago, I packed everything up and headed to one of the only two universities within the UK that trained orthotists and qualified as an orthotist with a speciality in EDS.

What is orthotics?

Let’s break it down. Orthotics or orthoses are specially designed medical devices.  The definition of an orthoses is “an externally applied device used to influence the structural and functional characteristics of the neuromuscular and skeletal system (ISO September 2020).  Orthoses can improve the quality of lives by improving mobility, reducing pain, aiding alignment, and often reducing or postponing the need for surgery.  Made to measure orthoses are only prescribed by an orthotist. Some stock items can be given out by physiotherapy or podiatry, but in general most are prescribed and manufactured by an orthotist.

Orthotists are a unique part of the medical field. Compared with other disciplines we are very few, mainly because there are only two universities in the UK training orthotists. (More are being opened due to a shortage of orthotists).

In addition to this, we are also dual qualified in prosthetics. You will find that most orthotists will either practice both disciplines or specialise one of the areas. This for me makes our assessment and perspective a little bit different and unique to other professions. (Obviously I’m biased!)

However, it is often very difficult to navigate the orthotic world. This is mainly due to a lack of understanding of how the orthotic world works, what can and can’t be prescribed and sometimes even other medical professionals’ knowledge of orthotics, often making it hard to know what to ask for and how to get the assessment you need.

Navigating the NHS world

Orthotists are generally governed by the referrals they receive and understanding referrals is a key part to orthotics.

If it becomes apparent that a patient requires a different type of orthoses to the referral, sometimes we may not necessarily be able to prescribe this device until we obtain a new referral with this device specified. For most instances we can change the prescription, but on some occasions, we do need further documentation.

Now is the time to bring up dynamic Lycra. Dynamic Lycra is an amazing orthosis for many conditions and in particular EDS, especially if a custom Lycra garment is made for a patient’s individual needs. However, there is so much confusion around this topic, even from other medical professionals.

I have seen many patient forums and even professional websites stating; “if an orthotist refuses to give patient dynamic Lycra, continue to push for the device until they relent”. This is completely inaccurate advice and please never do the above. Dynamic Lycra is a specialist device. Because of this, not all NHS Trusts have a Lycra budget. So, if you feel that you would be suitable for Lycra and your orthotist is not able to provide you with an assessment, please do not think that they are ignoring your needs. It is simply that they do not have a Lycra budget within their Trust.

Have a discussion with your orthotist, see if the devices you would like an assessment for are provided within that Trust and if not, ask to be referred into a Trust where they can be provided.

It’s also worth noting there is also a difference between a paediatric and adult orthotic service within all Trusts. Just briefly, here are some of the orthoses that an orthotist provides:

• Custom insoles
• Orthopaedic footwear
• Footwear adaptions
• Custom ankle braces
• Calliper
• Ankle foot orthoses (AFO)
• Knee ankle foot orthoses (KAFO)
• Hip ankle foot orthoses (HAFO)
• Dynamic ankle foot orthoses (DAFO)
• Silicone ankle foot orthoses (SAFO)
• Patella tendon bearing ankle foot orthoses (PTB AFO)
• Ground reaction ankle foot orthoses (GRAFO)
• Night splints
• Spinal braces – fracture and spinal curvatures
• Dynamic Lycra
• Hernia devices
• Knee braces
• Elbow/wrist supports
• Neck- fracture and supports
• Helmets – for self-harm protection and epilepsy

This is just a small range of the type of custom devices that we provide assessments for, prescribe and fit.  When we think about orthoses and patients, there are a few clinical objectives that we keep in mind when making an orthosis. These are to:

• Relieve pain
• Improve mobility
• Reduce instability or stabilisation of joints, i.e prevent excessive joint movement or increase joint movement
• Reduce risk of injury
• Correct or prevent physical joint deformities
• Prevent, reduce or stabilise a deformity
• Modify the range of motion of a joint segment
• Add length or alter the shape of a segment
• Compensate for weak or hyperactive muscle activity
• Reduce or redistribute the load on the tissues

When having an assessment with an orthotist, it’s very important that your orthotist has some understanding of EDS, but it is also equally important that your orthotist understands the comorbidities that arise with EDS. For example, when I assess a person with EDS, these are some of the things I want to know:

• If they have mast cell activation syndrome (MCAS) – are they are allergic to any of the material I will be using in the prescription?
• Do they have PoTS-like symptoms – are they heat intolerant; will this influence the type of orthoses we will use?
• Do they have fragile skin- how much pressure can the patient’s skin tolerate?
• How much proprioception does a patient have?

EDS and biomechanics

Biomechanics – analysis of the mechanics of human movement

Gait – a person’s pattern of walking 

When you think about your body, your body is made up of two units:

• Passenger – head, neck, truck and arms
• Locomotor – lower limbs and pelvis

Each unit has their individual role within gait, which is then further split into swing and stance phases. Within each of these phases there are specific movements that make up each phase:

• Stance – begins when the foot first touches the ground and ends when the same foot leaves the ground
• Swing – begins when the foot first leaves the ground and ends when the same foot touches the ground again

Because orthotics covers a vast range of orthoses, we assess your whole gait. Unlike other professions, we do not focus on one area; we look at the body as a whole. When we think about most gait patterns, most conditions have been very well documented. For example, we know if a stroke patient has drop foot what the best orthoses would be, based on years of gait analysis and research.  However, it important to note that there is very little research on EDS gait, therefore it’s important that your orthotist has experience with EDS.

With EDS there is a misconception that because you have EDS, you’re going to have collapsed arches. This is not the case and while some people with EDS will have pes planus  (flat feet), some have midfoot pronation, some have pes cavus (high arches) etc.

For EDS, It’s important that you are treated on an individual bases – what treats one EDS person will not be the same for the next.

What to expect at an orthotic appointment

I would advise that you bring shorts or a vest top. This may not always be needed, but I would advise, nevertheless. First, your orthotist will take a detailed medical background – if you have X-rays, please bring them with you as they are always helpful. I would also advise that you bring with you any orthoses you had previously, so that your orthotist can look at what has helped you and what hasn’t helped you, as this will help give them a better understanding of your condition.

The assessment will normally consist of gait analysis, muscle strength tests, range of movement tests and any other test your orthotist feels is necessary. There will be a discussion of the type of orthoses that will be suitable and if required, measurements will be taken. Sometimes a cast will be taken (which is why it is useful to have shorts or a vest available as this can get messy!).

I personally always discuss my patients’ gait analysis with them, as I feel understanding why things are happening and how we would be able to help goes a long way. Sometimes if the orthotist has stock items on site you could be fitted with something on the day, but generally most items are custom-made and therefore can require multiple follow-ups appointments.

Footwear

Footwear type is very important for your feet, particularly if you have any foot and ankle complaints. I would recommend having a sturdy shoe. Shoes that have memory foam or that are too flexible allow your body to compensate, mostly into an unwanted gait pattern, which can further allow your feet to deteriorate.

To find out if your shoe is sturdy, hold the hindfoot and the forefoot and try and bend the shoe in half, if the shoe can completely bend, these are far too flexible and not classed as a sturdy shoe.

Shoes for insoles – if you have custom orthotics or shop brought insoles, it is important that you wear these in neutral heel shoes.

Imagine if you have a flatfoot, your insole is providing you with an arch support to stop pronation (your foot rolling in). If you are high arched, you are more than likely a supinator, so the insoles are designed to stop your foot rolling out (supination). The main point here is if you supinate or pronate your insoles are built to stop these movements. Therefore, you need a shoe that will allow your insole to do the job it is supposed to.

Imagine again you have a lovely shoe with an arch built into it. Yes, this is great when you’re not wearing an insole. However, when you have insoles specifically designed for the purpose, this can often have the opposite effect.

So, if your insoles are made to stop pronation (by providing an arch support) and you place them in a shoe that has an arch support already, this combination will push you into supination, having the complete opposite effect of what the insoles are trying to achieve. To find a neutral heel, most shoe shops will know what this is and all trainer shops will know what a neutral heel is and will be able to point in the right direction. Even most trainer websites have subcategories for neutral heeled trainers.

Another way to check is to put your hand in to see if you feel an arch profile. Most of the time you don’t need to do this as you can see from the design by looking on the outside. The other way to check is to hold the shoe up in the air and look from behind. If the inside of the heel is higher than the outside, then the shoe has an anti-pronation device built in and would not be classed as neutral.

This is part 1 of a series of articles on Orthotics by Nicci Rogers, you can read part 2 here