North Cumbria Mental Health & Learning Disabilities

Children & Young People Services Standard Operating Procedure SOP for Hip Surveillance Pathway

Prepared by : Gemma Pugh, Physiotherapist. Dr Astagi Community Paediatrician. Helen Walker, Quality and Safety Lead Presented to: Ratified by:

Link to Policies : Consent Policy POL/001/010 link: https://www.cumbriapartnership.nhs.uk/assets/uploads/policy- documents/Consent_Policy_POL-001-010.pdf Children & Young People Services Standard Operating Procedure (SOP) for Processing Referrals into Children’s Specialist Services Guidance Hip Guidance NICE CG 145: Spasticity in children and young people with non-progressive brain disorders. Issued: July 2012

Important Note: The Intranet version of this document is the only version that is maintained.

Any printed copies should therefore be viewed as “uncontrolled” and, as such, may not necessarily contain the latest updates and amendments 1. Purpose of this document

This standard operating procedure defines the mandatory activity required to Monitor the hips of children who are at risk of hip displacement i.e. those with a diagnosis of Cerebral Palsy

2. Definitions

Term Definition Hip Surveillance Pathway Formal guidance on hip monitoring for children with Cerebral Palsy within Cumbria. Hip dysplasia Degree of hip movement away from the socket. Subluxation Degree of hip movement away from the socket Dislocation Degree of hip movement away from the socket. Hip Migration Percentage Degree of movement Cerebral Palsy (CP) Neurological conditions that are caused by problems in the brain and nervous system. The condition can occur if the brain develops abnormally or is damaged before, during or shortly after birth. Population Children with cerebral palsy across Cumbria. GMFCS Gross Motor Function Classification System NECCPS North of England Collaborative Cerebral Palsy Study. MDT Multi-disciplinary team

3. Duties and roles Role Duties Cumbria Partnership Foundation Trust To provide training and ensure that employees are qualified in their role. To provide the appropriate documentation support systems. Health Care practitioners To refer to the hip pathway when appropriate in assessing children and young people with cerebral palsy. Administrators Supports and coordinates the physical health team.

Referrer To ensure that appropriate consent for the CPFT Hip Surveillance v1.0 Completed November 2015 Review November 2016 referral has been gained. To provide adequate information to support the referral.

4. Scope of this SOP Covers persons involved in using the Hip Surveillance Pathway within Cumbria Partnership Foundation Trust.

5. Training and Qualifications Health Professionals:

All clinicians working under the Hip Surveillance Pathway must be registered with relevant professional bodies and HCPC. This will be followed by regular updates, information on the NECCPS data, pathway update.

6. Children and Young People covered  All Children and Young People between the ages 0-19 who have diagnosed Cerebral palsy/high suspicion of evolving Cerebral Palsy.  This SOP is undertaken when a health professional involved with the child/young person has concerns regarding hip movement/position of a child.

7. Procedure

Ref Activity By Whom By When Child, who is accessing Specialist Childrens Services, identified as having a diagnosis of 7.1 Paediatrician cerebral palsy/high suspicion of evolving cerebral palsy Health care practitioner should liaise to On diagnosis identify the most appropriate member of the multidisciplinary team, to coordinate the Health care 7.2 implementation of the Hip Surveillance practitioner Pathway (checking if the child has had a hip x-ray at the appropriate age, if not referring to Orthopaedics.) See Hip flowchart for details. Designated Therapist/Health care practitioner During open has awareness of clinical risk factors to look episode of Health care 7.3 for in hip surveillance (clinical risk factors are care practitioner documented on the Hip Surveillance Pathway Flowchart documentation). Once a diagnosis is made by paediatrician, Following parents are provided with risk factor Health care diagnosis 7.4 information sheet (parent hip information practitioner sheet) 7.5 Hip Surveillance Form 1 to be completed on Health care At diagnosis CPFT Hip Surveillance v1.0 Completed November 2015 Review November 2016 Ref Activity By Whom By When Rio. This will include a tick box which will trigger a notification to appear on the clinical portal. In the case of a child receiving a diagnosis of Cerebral Palsy from a practitioner paediatrician out with the CPFT a qualified health practitioner within the specialist network should ensure that the alert is added to the patient record. Consent Form and Hip Surveillance Form 1 At next completed at next appointment (if child aged appointment Health care 7.6 over 4 years then Hip Surveillance Form 2 following practitioner should be completed) and scanned into the diagnosis clinical record on Rio. If significant risks/concerns are identified by Immediately, If any health professional involved with the significant child, then the child/young person should be Health care risks/concerns 7.7 referred to the local Acute Paediatric practitioner are identified Orthopaedic Consultant team for assessment and input. All health care practitioners who have input into the care of children and young people with cerebral palsy should have an awareness of the risk factors for hip Health care 7.8 displacement (documented on the hip practitioner pathway) and the route for referral to the Acute Orthopaedic team for further assessment where necessary.

8. Consent

Consent for sharing information will be confirmed according to the Trust’s consent policy.

Requests for assessment will not be accepted if consent for the request from the person with parental responsibility is not specified. It is the referrer’s responsibility to obtain appropriate consent for request for assessment.

Appendices:

Appendix 1 Parent/Carer information sheet - for early identification of a hip problem in children with Cerebral Palsy

Appendix 2 Pathway Flowchart

Appendix 3 NECCPS Flowchart

CPFT Hip Surveillance v1.0 Completed November 2015 Review November 2016 Appendix 4 Equality Impact Assessment

CPFT Hip Surveillance v1.0 Completed November 2015 Review November 2016 Appendix 1 Parent/Carer information sheet - for early identification of a hip problem in children with Cerebral Palsy

Cumbria Partnership NHS Foundation Trust have developed a way of working to make sure that children who have cerebral palsy or who might have cerebral palsy have their hips monitored at regular intervals. Children who do not walk or stand regularly are at an increased risk of hip problems such as displacement or dislocation.

Regular x-rays will help us to spot problems early on so that we can put measures into place to help stop the problem getting worse. If a problem is spotted, it may be advisable to monitor your child’s hips every 6 months. Children with Cerebral Palsy or suspected Cerebral Palsy should have had a hip x-ray by age 2 at the latest.

Please tell your child’s consultant at every appointment if you have any of the concerns below.

If your child has:  Pain coming from the hips  Difference in child’s leg length  Movements at either hip is reduced  Increased tightness of the hip muscles  If sitting or standing gets worse  Increased difficulty in cleaning during nappy changing

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Date:/Version: June 2015 (V2) Appendix 2

Hip Surveillance Pathway

Child with Cerebral Palsy/ Suspected CP before 2 years Box A NECCPS information Clinical Concerns: given/sent. • pain arising from the hip Clinical hip assessment at every • clinically important leg length difference examination (If Concerns- Box) • deterioration in hip abduction or at 18/12: unable to sit or range of hip movement without support or at 30/12 – • increasing hip muscle tone unable to walk independently • deterioration in sitting or *If no other risk, standardised supine AP standing film including migration percentage • increasing difficulty with (MP) as per x-ray protocol at 2yrs perineal care or hygiene routinely (see Appendix C) Pelvic radiograph as per Protocol (latest 1st X-ray at 2yrs * if not performed already)

GMFCS I & II GMFCS III & IV Ambulant and MP stable Ambulant / Non ambulant GMFCS V & MP10-30% Non Ambulant & MP 10-

Annual clinical review Annual clinical review Annual clinical review (Box) (Box A) (Box A) & pelvic & pelvic radiograph with MP

Discontinue hip Discontinue annual Continue annual radiographs surveillance if radiographs if MP stable aged & clinical review until asymptomatic aged 5 7 (continue annual clinical skeletal maturity

Recommence annual Skeletal Maturity: radiographs at the onset of Ossification of the tri- radiate puberty & continue until cartilage skeletal maturation

Consider increasing frequency of hip Consider referral to orthopaedics if: surveillance from annually to 6 monthly - MP >30% irrespective of GMFCS status if: - MP <30% but increasing by more than 1. Any Box A clinical concern or 10% each year 2. Radiologically: - There is significant pain related to the - hip - Other orthopaedic conditions are identified Appendix 3

EQUALITY IMPACT ASSESSMENT FORM

PLEASE CONSULT THE EIA GUIDANCE DOCUMENT WHEN COMPLETING THIS FORM.

The Equality Act 2010 came into force on the 1st October 2010. Under the Act there is a legal obligation to undertake Equality Impact Assessments (EIAs). The Trust and its employees must have due regard of the need to:

 Eliminate unlawful discrimination, harassment and victimisation and other conduct prohibited by the Act  Advance equality of opportunity between people who share a protected characteristic and those who do not  Foster good relations between people who share a protected characteristic and those who do not

EIAs assess the impact of the Trust’s actions on people from the protected characteristics identified in the Act. In addition they should show how our policies and practices would further or have furthered the above aims. Demonstration of the engagement you have undertaken when doing the assessment will be a key part of this process. Engagement covers a range of different activities, from formal public consultations to direct engagement with people from protected groups. The level of engagement you undertake will depend on the scale of policy/ project/ activity you are developing or updating.

To comply with legislation EIAs must be a comprehensive, formal and structured process and the results must be published. These factors enable the Trust to demonstrate to all stakeholders and regulatory bodies that we have fully addressed Equality and Diversity within the Trust.

An Equality Impact Assessment must be done at the development stage of any policy, review, project, service change etc.

(Please refer to the Equality Impact Assessment Guidance available on the Equality and Diversity section of the Trust web site)

1 Name and Job Title of person completing Helen Walker assessment 2 Name of service, policy or function being Implementation of Hip Surveillance assessed Pathway 3 What are the main objectives or aims of the To standardise a pathway for the early service/policy/function? identification and management of hip displacement in children and young people with cerebral palsy. 4 Date January 2015

PLEASE USE THIS PROCESS FLOWCHART ALONGSIDE THE CURRENT EIA GUIDANCE DOCUMENT Initial Assessment 5 What evidence is available to suggest that the proposed service/policy/function could have an impact on people from the protected characteristics? Document reasons, e.g. research, results of consultation, monitoring data and assess relevance as either: Not Relevant / Low / Medium / High. Note: that for any level of relevance (including areas rated as not relevant) evidence must be provided in appropriate box below. Protected Characteristic Grading Evidence a Race N/A The pathway applies to all children aged 0-19 who are at risk of hip dislocation through musculoskeletal and neurological changes due to their diagnosis of cerebral palsy, regardless of any protected characteristics b Religion / Spirituality N/A “ c Gender N/A “ d Disability N/A Following NICE guidelines, the pathway is applied to children are assessed according to their clinical presentation and level of risk. e Sexual Orientation N/A The pathway applies to all children aged 0-19 who are at risk of hip dislocation through musculoskeletal and neurological changes due to their diagnosis of cerebral palsy, regardless of any protected characteristics f Age N/A Following NICE guidelines, the pathway is applied to children are assessed according to their clinical presentation and level of risk. g Pregnancy/maternity N/A Not relevant to children’s services h Gender Reassignment N/A “ I Marriage and Civil N/A Not relevant to children’s services Partnership j Carers N/A According to trust policy, CLA are given priority regarding assessment. If you assess all the service/policy/function as not relevant, please proceed to section 11. If you assess any of the service/policy/function as relevant, continue to section 6, Full Assessment and Follow up.

Full Assessment and Follow Up 6 Are there service user, public or staff concerns that the proposed service/policy/function may be discriminatory, or have an adverse impact on people from the protected characteristics? a Public b Staff If there are no concerns, proceed to section 11. If there are concerns, amend service/policy/function to mitigate adverse impact, consider actions to eliminate adverse impact, or justify adverse impact. 7 Can the adverse impact be justified?

8 What changes were made to the service/policy/function as result of information gathering?

9 What arrangements will you put in place to monitor impact of the proposed service/policy/function on individuals from the protected characteristics?

10 List below actions you will take to address any unjustified impact and promote equality of outcome for individuals from protected characteristics. Consider actions for any procedures, services, training and projects related to the service/policy/function which have the potential to promote equality. Action Lead Timescales

11 Review date I am satisfied that this service/policy/function has been successfully equality impact assessed. Date: 09.01.2015 Author: Helen Walker Please send the completed form to: Registration and Governance Team, Cumbria Partnership NHS Foundation Trust, Cumberland House, The Carleton Clinic, Carlisle, CA1 3SX. [email protected].