Patient journey after approval for surgery

The patient and their parents/carers will be invited to an SDR clinic appointment to discuss surgery and the inpatient stay.

There will be an opportunity for the family to meet clinicians who will involved in their care and ask questions.  Any operative risks will be discussed.  We also use this opportunity to discuss patients goals and expectations following the SDR procedure.

A pre-op physiotherapy assessment will be arranged once a date for surgery is set.  Videos and measurements forms the mainstay of this assessment.

Patients will normally be admitted on the day prior to surgery.

Where will the patient go for their surgery?

The inpatient SDR surgery and immediate post-operative inpatient rehabilitation will take place in The Royal Hospital for Children in Glasgow and require up to three weeks of inpatient stay.

This is normally 1 week for patients undergoing SDR for care and comfort improvements and three weeks for patients with more intensive physiotherapy input for GMFCS level II/III patients.

 

How long will the child have physiotherapy in hospital?

At present the children referred for SDR will be seen by a specialist SDR physiotherapy supported by a acute hospital based physiotherapy services.  They will remain on bed rest for the up to 48 hours following surgery. They will receive physiotherapy input daily for the first 3 weeks post-operatively if they are walkers prior to surgery and one week if their SDR is care and comfort focused. 

A detailed handover will be given to transfer care back to the child's local community physiotherapist.

If convenient, the local physiotherapist will be invited to come into the hospital or meet online to have a joint session prior to hospital discharge.

Follow Up Post Surgery

At 3 months post op

Neurosurgical review with the surgical team

Gait Analysis

Gait Analysis or physiotherapy assessments will be carried out at regular agreed intervals after surgery and are patients are usually followed up until they leave children services and transition into adult services. 

This can help to focus problem solving if changes during development occur to the child.

Local physiotherapy Assessments

Local CPIPs annually by local therapists will be carried out as normal. 

Acute SDR Physiotherapy assessments

Will be carried out again 6 months after surgery along with:-

  1. CPQOL
  2. Muscle Power
  3. Sensation, pain and continence
  4. SCALE (selective motor control)
  5. 2 and 6 minute walk test.

Other tests may be used where appropriate.

SDR National MDT discussion

The local MDT SDR team will receive feedback from some of the above assessments in order to evolve their informed decisions in relation to the service.

Orthotic Service and SDR

Children who have had SDR surgery are likely to need Ankle Foot Orthotics (AFOs) after surgery.

As part of the inpatient journey SDR patients will be seen by an orthotist from the hospital who will assess the child's current orthoses. If replacements are required a plan will be made to provide new AFOs and this will be arranged by the orthotic team.

The child may also require resting ankle splints (off the shelf heel pressure relieving AFOs) and knee gaiters. These will also be provided if required.

Ongoing orthotic care will be by the child's local services following surgical discharge.