yorkshire and humber children and young people’s cancer

Yorkshire and Humber

Children’s and Young People’s Cancer Network

Yorkshire and Humber Children and Young People’s Cancer Network

Psycho-Social and Holistic Needs Assessment Guidelines

March 2015

*** VALID ON DATE OF PRINTING ONLY - all guidelines available at http://www.ycn.nhs.uk/ ***

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i Document Control

Title Psycho-Social and Holistic Needs Assessment Guidelines

Author(s)

Hilary Suddes

Team Manager Regional Specialist Team

David Thomas

Children’s Oncology Macmillan Nurse Specialist Team Leader

Karen Shimmon

Senior Clinical Psychologist for TYA Oncology

Rachel Hollis

Lead Nurse, Children’s Cancer LTHT

Owner Yorkshire and Humber Children and Young Peoples Cancer Network

Version Control

Version/ Draft Date Revision summary

1.0 21/12/2010 Published

1.1 Jan 2015 Updated draft following feedback

2.0 March 2015 Final

Contributors to current version

Contributor Author/Editor Section/Contribution

Karen Shimmon Author

Hilary Suddes Author/Editor

David Thomas Author/Editor

Rachel Hollis Author/Editor


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ii Information Reader Box

Title Psycho-Social and Holistic Needs Assessment Guidelines

Author(s)

Hilary Suddes

Team Manager Regional Specialist Team

David Thomas

Children’s Oncology Macmillan Nurse Specialist Team Leader

Karen Shimmon

Senior Clinical Psychologist for TYA Oncology

Rachel Hollis

Lead Nurse, Children’s Cancer LTHT

Publication date March 2015

Review date March 2017

Proposed Target Audience for Consultation / Final Statement

All consultations and e-mail notification of updated guidelines will be consulted to:

YHCYPCN Paediatric and Adolescent group

Paediatric Oncology and Haematology management team

CNS teams in Paediatric& TYA Oncology and Haematology

Proposed Circulation List for Final Statement

All YHCYPCN Paediatric and Adolescent group guidelines will be made available electronically at http://www.ycn.nhs.uk.. No hard copies will be circulated by the Group.

Contact details

Hilary Suddes

0113 3922492

[email protected]

David Thomas

0113 3922323

[email protected]

http://www.ycn.nhs.uk/

mailto:[email protected]

mailto:[email protected]


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iii Table of Contents

I DOCUMENT CONTROL .................................................................................................... 2

II INFORMATION READER BOX ......................................................................................... 3

III TABLE OF CONTENTS ..................................................................................................... 4

1 GUIDELINE BACKGROUND ............................................................................................. 5

2 GUIDELINE STATEMENTS ............................................................................................... 6

3 THE ROLE OF THE KEY WORKER AND HOLISTIC NEEDS ASSESSMENT ............... 7

4 ACCESS TO SPECIALIST SOCIAL WORK...................................................................... 9

5 ACCESS TO THE CLINICAL PSYCHOLOGY SERVICE IN LEEDS .............................. 10

6 ACCESS TO PAEDIATRIC NEUROPSYCHOLOGY ...................................................... 11

7 PSYCHOSOCIAL SUPPORT FOR SIBLING’S ............................................................... 12

8 LONG TERM FOLLOW-UP ............................................................................................. 13

9 BEREAVEMENT SUPPORT GUIDANCE........................................................................ 14

10 APPENDICES ................................................................................................................... 15

10.1 APPENDIX 1: CLIC SARGENT HOLISTIC NEEDS ASSESSMENT ................................................ 15 10.2 APPENDIX 2 - LONG TERM FOLLOW UP HOLISTIC NEEDS ASSESSMENT (PAEDIATRICS) ............ 31 10.3 APPENDIX 3 - LONG TERM FOLLOW UP HOLISTIC NEEDS ASSESSMENT (ADULT) ...................... 34


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1 Guideline Background

The NICE Improving Outcomes Guidance for Children & Young People with Cancer (2005) section on psychosocial care recommends that

All families should be offered the advice and support of a social worker.

They should have access to expert psychological support

There should be a structured psychosocial assessment at significant points throughout care pathway.

Assessment of information needs should be included.

There should be access to neuropsychological services for cognitive assessment particular for those with CNS Tumours.

All families should be offered benefits advice. The NICE Quality Standard 55 ‘Children and Young People with Cancer’ states as Quality Standard 4: children and young people with cancer, and their families and carers, have their psychological and social needs assessed at key points on their care pathway and receive support based on their identified needs. Children and young people’s cancer services in North and West Yorkshire and the Humber are organised around a designated Principal Treatment Centre (PTC) at Leeds Teaching Hospitals NHS Trust and its associated Paediatric Oncology Shared Care Units (POSCUs). This guidance is intended to be used across the Yorkshire and Humber Children and Young People's Cancer Network Group.


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2 Guideline Statements

A multi-professional approach is taken for the assessment of children & young people with cancer to ensure that various domains are assessed by those with the most appropriate skills and to reduce repetition for families. A summary of specific additional needs identified in these assessments (e.g. those requiring further referral) is presented at the weekly psychosocial Multidisciplinary Team (MDT) meeting at the PTC. All patients should be routinely presented and discussed at the MDT at key points in their pathway.

At diagnosis

Prior to surgery or radiotherapy

At the end of treatment

At relapse

At the start of and during palliative care

At any point where there is a significant change or challenge to health and well being, or when concern is expressed by the family, or other members of the wider MDT.

The MDT is responsible for agreeing an action plan for supporting the additional psychosocial needs of the patient and the family / carer. Referrals, action plans and outcomes are recorded at the meeting and distributed to the MDT.


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3 The role of the Key Worker and Holistic Needs Assessment

Each child or young person and their family is offered the support of a Children’s Cancer or Teenage and Young Adult (TYA) Nurse Specialist at the PTC to undertake the role of ‘Key Worker’ in supporting, managing and co-ordinating their care. A detailed breakdown of the role along with the referral and discharge criteria can be found in the Yorkshire and Humber Children and Young People’s Cancer Network operational policy for the Key Worker. http://www.ycn.nhs.uk/html/downloads/yhccn-cyp-keyworkerpolicy-v3-jan2014.pdf The Key Worker will offer a ‘Holistic Needs Assessment’ (HNA; see Appendix 1) to each newly diagnosed child or young person and their family, with an aim to complete the assessment within 4 weeks of diagnosis. The current tool used by the Children’s Cancer Nurse Specialist Team is the CLIC Sargent Holistic Needs Assessment Tool. The holistic needs assessment is an on-going process with key assessments being offered at defined points along the patient pathway.

At diagnosis

During treatment (between 3 and 6 months into therapy)

At relapse

Prior to stem cell transplant

Prior to surgery or radiotherapy

At the end of treatment

At the start of palliative care

At any point where there is a significant change or challenge to health and well-being, or when suggested by families, or other members of the wider MDT.

The assessment covers the physical, practical, emotional, psychological and spiritual impact of diagnosis and treatment upon the CYP and family. If as a result of any assessment concerns are raised then patients will be submitted to be discussed and at the psychosocial MDT to allow support plans to be agreed. With parental consent the completed holistic needs assessment, will be shared with community nursing and shared care colleagues. At this time local resources that are available to support identified needs will be discussed and appropriate referrals made. Each CYP and family who is referred to a POSCU will have their holistic needs assessment discussed at the local POSCU MDT meeting, attended by their Key Worker from the PTC.. Patients and families who require low level interventions and psychological support may receive this from their key worker. To support the key worker in providing psychosocial care they will have access to support and supervision form a paediatric psychologist. The information needs of the child or young person and their family are predicted through the provision of a patient information pathway. Their information needs will be assessed by the key worker at specified time points along the pathway as part of the holistic needs assessment outlined above. For CYP of compulsory school age their education and schooling needs will be jointly assessed by their key worker and the hospital Medical Needs Teaching Service. Plans to

http://www.ycn.nhs.uk/html/downloads/yhccn-cyp-keyworkerpolicy-v3-jan2014.pdf

http://www.ycn.nhs.uk/html/downloads/yhccn-cyp-keyworkerpolicy-v3-jan2014.pdf


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support both their educational and health care needs within school will be developed and shared with the child’s school and family. The allocated social worker will also offer advice and support if there are any additional concerns or issues which are preventing the child from returning to school. Further information regarding the support for education and schooling can be found in the YHCYPCN “Guideline for Schooling and Education for Children and Young People Receiving Immunosuppressive Cancer Treatment” http://www.ycn.nhs.uk/html/downloads/ycn-cyp-guidelineforschoolingandeducation-v1.0-nov2014.pdf

http://www.ycn.nhs.uk/html/downloads/ycn-cyp-guidelineforschoolingandeducation-v1.0-nov2014.pdf

http://www.ycn.nhs.uk/html/downloads/ycn-cyp-guidelineforschoolingandeducation-v1.0-nov2014.pdf


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4 Access to Specialist Social Work

Children & young people are referred to the Regional Specialist Social Work Team at the point of diagnosis from either:

Outpatients and Day Care - Social Workers are linked to specific clinics and attend pre-clinic meetings

Inpatients - Social Workers attend the wards and the weekly ward round MDT

Psychosocial MDT meeting All patients and their families are offered a service from the Social Work team. If the family accept support a ‘Child and Family Assessment’ is undertaken. The Social Worker will collate the following information: who has made the referral, the diagnosis and stage of treatment (initial diagnosis, relapse, palliative care etc.). Once consent has been obtained from the family the Social Worker will contact the local social care department to ascertain involvement and available local support, read the medical file and discuss any issues with the MDT. The social worker will talk to the patient (age appropriately), their family (all relevant members) and the hospital staff to collate the information needed to assess the specific needs for the child / young person and their family. The Social Worker will then analyse the information they have gathered to formulate a package of support which will include signposting to other agencies (Charities, Benefits support, Education, Housing etc.), looking to the roles within the MDT and offering their own skills to ensure that the needs of the child / young person and their family are met. The social worker for the child will liaise with the Key Worker to ensure that the ‘Holistic Needs Assessment’ reflects this package of support. The Social Work Team re-assess needs every 3 months for as long as the family need support. Cases are closed in consultation with the family when the family are maintaining their own needs and there is no longer a social work role. Repeat referrals can be made at any point thereafter if new needs arise, e.g. relapse, palliative care, change in family circumstances. The Social Work Team are informed via the referral pathway if a child / young person becomes palliative. If there is no active Social Work involvement the child / young person and their family are contacted and offered Social Work support and a re-assessment of their needs.


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5 Access to the Clinical Psychology Service in Leeds

If the MDT in Leeds determines that a child, young person or family is presenting with psychological difficulties which are more complex (i.e. moderate - severe anxiety or depression) and such difficulties have not responded to interventions made by other members of the MDT, a referral can be made to the Senior Clinical Psychologist for Paediatric and TYA Oncology. Referrals are made via telephone consultation, at the Psychosocial MDT meeting, by formal letter or using a referral form. It is expected that certain care pathways will trigger a referral to Clinical Psychology, including patients undergoing Stem Cell Transplant or potential amputation. The Psychologist will review the referral to assess appropriateness and signpost to alternative services if necessary. The Psychologist will send an appointment to the family to attend their outpatient clinic for a formal psychological assessment or will see the patient and family on the ward if they are an inpatient. The psychological assessment will determine the most appropriate intervention and will vary according to the presenting difficulties, age, and specific needs of the family. Formulations are shared with members of the wider MDT, where appropriate. The clinical Psychologist has a role in delivering Psychological Needs Assessment training to the Macmillan and Social Work Team. Consultation is available to any member of the MDT on request.


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6 Access to Paediatric Neuropsychology

Referrals for neuropsychology should be made via the Neuro-oncology MDT meeting and recorded formally within the MDT minutes (in the ‘Outcome’ section). Agreed referral criteria are: Inclusion Criteria 1. Cerebral hemisphere tumours with a high risk of neuropsychological impairment. 2. Children with severe neurological complications following treatment/s. 3. Children who have received radiotherapy or proton therapy. 4. Children and young people up to 19 years. For some patients aged 16-18 years it may be more appropriate for their needs to be met by the Adult Neuropsychology service. Patients in this group will be considered on a case-by case basis. Exclusion Criteria Palliative care patients, unless specific neuropsychological concerns have a significant impact upon quality of life. Discharge Criteria 1. Child/young person is in a stable neuropsychological condition. 2. The child’s needs are represented appropriately to other agreed agencies i.e. Education.


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7 Psychosocial Support for Sibling’s

The MDT provides sibling support through a sibling support group. This group is available to all siblings aged between 5-15 years of age and it is held every other month on a Saturday between 10.30am until 2.30pm. The remit of the group is to have fun, meet other children in a similar situation, share experiences, ask questions and to take part in games and activities. The MDT also has access to age appropriate literature about the various conditions to support siblings and school friends about the child / young person’s condition and treatment.


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8 Long Term Follow-up

At five years following treatment completion every CYP will be referred to the long term follow up service. At referral a detailed treatment summary and care plan will be shared with the CYP and their family. This has details of the past cancer (or related) diagnosis, treatments received and any potential late effects that may be experienced and details of how surveillance will be carried out. Each CYP will be offered and encouraged to complete a specific Holistic Needs Assessment form (Appendix 2&3). This aims to help identify any physical, emotional, spiritual, mental, social and environmental needs. This in turn informs the development of an individual care plan. In addition the service offers healthy lifestyle advice e.g. eating healthily, exercising regularly, support, information and advice during and in between clinic visits.


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9 Bereavement Support Guidance

A key worker will be identified for bereavement follow up for all families. This role may be undertaken by either the family’s Social Worker or Nurse (from either the PTC or POSCU) as appropriate. The identified key worker will provide immediate follow up – up to and immediately post the funeral. If contact is not made after the funeral, they will ensure that a card/letter is sent with the date of the next call and an offer of a visit/contact at any time. Interim follow up - contact is made within the first month to discuss and assess bereavement support needs i.e. by home visits, Bereavement Group and local support. The above is the minimum level of support that all families should receive. Support in the longer term can be negotiated by those families who require it. The families can be offered: Where appropriate – monthly visits for six months then reassess the family needs. Support to the first anniversary if necessary. If further support is still needed referrals will be made to local community support. The CLIC Sargent Care Support Worker will ensure hospital contact is maintained by:-

Sending a sympathy card at time of death

An acknowledgement card at the first anniversary with signposting to local and national bereavement support service

A card at the first Christmas/ Festival A remembrance service is held every two years and all families who have had a child or young person die within the last three years are invited.


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10 Appendices

10.1 Appendix 1: CLIC Sargent Holistic Needs Assessment

CLIC Sargent Holistic Needs Assessment

Patient details


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Name of hospital

Name of person completing form

Add details or affix sticker

Name of child

CLIC Sargent reference number

Hospital number



Patient details


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Name of hospital



Name of child


Hospital number

Signature sheet Name Designation Signature Initials Date


Patient details


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Name of hospital



Name of child


Hospital number

Patient details Key Worker. Shared care nurse

Identifying details Details of child being assessed __________________________________________________________________________________

Name Sex

Known as Age

Address Date of Birth

Country of

Origin

NHS ID

Ethnicity Contact

Numbers

Religion Diagnosis

Interpreter

required

Treatment

protocol

Leaflets in

another

language?

Allergies

Date of

registration

CLIC Sargent

reference no.

Details of carer / parents

Please tick and date to confirm that

carer/parents have been provided with

information of who to contact in an emergency

Date

Other details

Name Contact numbers

Address Relation to patient

Post Code Parental responsibility

Name Contact numbers

Address Relation to patient

Post code Parental responsibility


Patient details


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Name of hospital



Name of child


Hospital number

Siblings

Pets

School/nursery contact details

Safety/need to know

Lone worker policy considered?


Patient details


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Name of hospital



Name of child


Hospital number

Patient details continued Professionals – details of professionals involved in the patient’s care

Other professionals involved in care

Role Name Telephone Fax Email

Name Telephone Fax Email

GP

GP practice

Hospital consultant

Shared care consultant


Patient details


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Name of hospital



Name of child


Hospital number

Assessment check list

1.0 Assessment information and preferences

The assessor should have copies of previous holistic assessments on file, should be aware of the needs identified in previous assessments, and should be aware of actions taken to address those needs. All entries on this assessment should be initialled, whether completed by the specialist nurse key worker or another professional.

Name of patient being

assessed

Date of this

assessment

Site of this

assessment

Date of any

previous

assessment

Name, role and contact details of

assessor

People present at assessment

Consent gained for assessment

Reason for assessment

Relevant family history

Transition – do you need to consider

transition for this patient (e.g. children

to adult services or to another location

due to patient moving away from the

area).


Patient details


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Name of hospital



Name of child


Hospital number

Areas to consider / discuss Comments Initial Date

2.0 General health

Relevant clinical history

and pre-existing

morbidities

Current medication

Complementary therapies

that have been used or are

being used

Venous access available?

Line care information

discussed?

Preferred place of care or

treatment

Information needs and

preferences discussed

Mobility issues

3.0 Physical impact of

disease/treatment

Fatigue

Balance problems

Pain/altered sensation

Vision

Hearing

Sleep disturbance

Swelling/oedema


Patient details


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Name of hospital



Name of child


Hospital number


Shortness of breath

Mouth care

Nutrition issues [including

gastrostomy etc.]

Swallowing

Cough

Weight change

Nausea and vomiting

Changes to skin/hair/nails

Wound care

Temperature management

Urinary issues

Bowel

Sexual health

Fertility

Any other adverse effects

of treatments (if

treatments have been

received)


Patient details


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Name of hospital



Name of child


Hospital number


4.0 Social and occupational

needs

4.1 Psychological well-

being

Comprehension of illness

and treatment by child


and treatment by

parent/carer


and treatment by family

Anxiety

Coping mechanisms

Mood and interest

Referrals made

4.2 Home environment

Transport issues

Personal care

Housekeeping

Getting around/mobility

4.3 Education

School/education/nursery

4.4 Family Finance

Day-to-day finances


Patient details


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Name of hospital



Name of child


Hospital number


Employment issues

4.5 Family and close

relationships

People close to patient

Siblings

Social relationships

4.6 Social and recreational

Hobbies and leisure

4.7 Spiritual well-being

Faith/belief

Worries and challenges

Needs related to spiritual

well-being

Restrictions related to

culture or belief system

Life goals

5.0 Any significant factors

in family support

network/family tree


Patient details


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Name of hospital



Name of child


Hospital number

Care plan

Identified

need

Required action Responsibility Date for completion/review


Patient details


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Name of hospital



Name of child


Hospital number

Re-assessment log

Comments Initial Date

Reason for re-assessment

Key changes noted

Does this trigger a full re-

assessment?

Any changes to the care

plan?



Key changes noted


assessment?


plan?



Key changes noted


assessment?


plan?


Patient details


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Name of hospital



Name of child


Hospital number

Notes


Patient details


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Name of hospital



Name of child


Hospital number


Patient details


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Name of hospital



Name of child


Hospital number


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10.2 Appendix 2 - Long term follow up Holistic Needs Assessment (paediatrics)


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Date of visit / /

Holistic Needs Assessment - Paediatric Long Term Follow Up

NAME: ………………………………………………………………………………………….. HOSPITAL No.:

……………………….. (or affix addressograph label)

Date of birth:…………………….

This form has been designed to help us meet you and your child’s needs more effectively at your

clinic visit.

Please take your time and read carefully before ticking the boxes that apply to you and your child.

Once completed give to the nurse or doctor before you are seen.

Please note that some of these issues may not be relevant to you.

X = Patient

√ = Parent/Carer

Your concerns Please tick the box which best describes how you feel

How are you

feeling now about

the issues below?

Not worried

about

Slightly

worried

about

Worried

about

Very worried

about

Extremely

worried about

1 My original diagnosis

& treatment

2 Second malignancies

3 Growth &

development

problems

4 Hormonal issues

5 Heart problems

6 Fertility issues

7 Sexual issues

8 Psychological issues

9 Social / family issues

10 Educational /

employment issues

11 Healthy lifestyle

issues

12 Your spirituality, faith

or belief?

13 The meaning or

purpose of life?

14 Any other issues -

please state:

………………………………..

Please turn over and complete


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Please let us know the medications you are taking at present:

Name of medication

How much

do you

take?

How often do

you take it?

What is this

medication for?

Thank you

Long Term Follow Up Team (Paediatrics)

Paediatric, Adolescent + Young Adult Oncology +Haematology

Ward 79

Clarenden Wing

Leeds General Infirmary

Leeds

LS1 3EX


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10.3 Appendix 3 - Long term follow up Holistic Needs Assessment (Adult)

***VALID ON DATE OF PRINTING ONLY - all guidelines available at http://www.ycn.nhs.uk/ ***

Appendix 3 - Long term follow up Holistic Needs Assessment (Adult) Concerns Thermometer - Long Term Follow-up

Addressograph here Date Completed / / First please circle the number (0-10) that best describes the level of concern, in general you have been experiencing over the past month, including today.

Following, is a list of concerns which people often report. If any of these have caused you concern or worry over the last month please tick the box. If you have any other problems/concerns which have not been included please tell your nurse.

- - Practical Concerns Insurance/Finance Work/School Family/Social Concerns

Relationship with partner/children/family members

Loss of social life Emotional Concerns Worry Sadness Depression Nervousness/anxiety

Anger

Loss of enjoyment Spiritual/religious Concerns Loss of religious faith Difficulty relating to God

Loss of meaning or purpose of life

- - Physical Concerns My original diagnosis & treatment

Second cancers/tumours

Growth & development

Hormonal issues

Fertility issues

Sexual issues

Psychological issues

Healthy lifestyle

Concerns about the way I look Other problems/concerns: …………………………………………………. …………………………………………………. …………………………………………………. ………………………………………………….

HIGH

CONCERNS

NO

CONCERNS


Please let us know the medications you are taking

Name of Medication

How much do you take?

How often do you take it?

What is this medication for?

Thank you

Long Term Follow Up Team (Adult) Level 4

Bexley Wing St James’s University Hospital

Leeds LS9 7TF

yorkshire and humber children and young people’s cancer

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