Rheumatology and Ehlers Danlos syndrome

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Who needs care from our service

We accept physiotherapy referrals for children when the condition is:

  • significantly impacting on gross motor functional ability
  • causing sleep disturbance on a regular basis
  • impacting on attendance at school.

Making a referral

We accept referrals from anyone involved in the child’s care.

This includes family, school, medical professionals and external support services.

Please give us as much detail as possible as to how the child’s symptoms are currently impacting on their day-to-day activity.

What can we do for you?

Depending on the outcome of the assessment we will likely recommend an exercise programme. Your child will need to complete this programme regularly at home to improve their symptoms. They may also be able to do the programme at school so it’s helpful to discuss this with the special educational needs coordinator. We will make sure you have your physiotherapist’s contact details. If you have any questions about the exercises you will be able to contact them directly.

We usually offer a review appointment about every four to six months. If you feel your child’s condition changes or they start to find an activity more difficult please contact us as an earlier review might be needed. If your child is doing well with the exercises and has a reduction in symptoms, we will discuss discharge.

Following discharge we usually recommend that your child continues with the exercises. If things change in the future you are able to make a re-referral.

We can offer some sessions with an integrated therapy assistant if you need extra help to get your child to engage with the exercise programme or to deliver the programme at school.

If your child needs specialist equipment or orthotics such as splints, walking aids or specialist seating this we will assess for and provide this as part of your child’s care.  Any equipment we provide is reviewed on a six monthly basis.

We are able to refer internally to occupational therapy or speech and language therapy if this is needed.

We can also refer to other services such as the wheelchair service.

Background

Oliver is 17-years-old with a diagnosis of Marfans Syndrome. We have worked with him since 2010. Oliver was experiencing a lot of pain, significant generalised weakness and fatigue.

What we did

We designed a home exercise programme for Oliver to strengthen his weak muscles. We made sure an occupational therapist could assess his classroom seating and his ability to engage in everyday activities at school. We visited his school to give advice for safe participation in physical education (PE).

Oliver didn’t need specialist seating but we made recommendations that would support him to continue to access learning and manage his fatigue.

Oliver was able to self manage his exercise programme and his fatigue so we agreed a discharge in 2017.  However, Oliver developed some new functional difficulties so we accepted a re-referral to the service. We currently review Oliver every six months and make sure his exercise programme is up-to-date. The exercise programme is tailored specifically to meet his need.

Feedback from Oliver's parents

My son has received on-going support over several years from the physiotherapy team as his complex condition has evolved. The physiotherapist performed a thorough assessment as part of his education, health and care process and developed short and long-term goals in partnership with us and which are reviewed periodically.

A tailored exercise programme was developed at the outset and this is adapted following each assessment to include his feedback and his general pain and mobility levels.

Appointments have taken place in clinic, at home or school which is helpful to make sure environmental challenges are being identified and addressed. The therapists we have been lucky to work with have been highly engaged, with a cheery and positive approach, even when facing resistance, which helps to make sure the therapy is ultimately making a measurable impact to his outcomes.

Children's Integrated Therapy Service

Speak to the team for
more information.

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