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Grief support for children and young people in Oxfordshire Supporting bereaved children in the community: practice, wisdom and interventions Dr Helen Mackinnon Director Irish Childhood Bereavement Conference Dublin Castle Saturday October 4 th 2014

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Presentation by Helen Mackinnon


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Grief support for children and young people in Oxfordshire

Supporting bereaved children in the community: practice, wisdom and interventions Dr Helen Mackinnon Director

Irish Childhood Bereavement Conference Dublin Castle Saturday October 4th 2014

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Why we need child bereavement services

‘We in the Western world live with a paradox: death is all around us, yet we believe that if we do not talk about death, it will not touch them. We try to protect and insulate them from this fact of life, which is typically associated with anxiety and pain.’

Silverman 2000

Children as ‘Forgotten mourners’ Smith 1999

Children and ‘Disenfranchised grief’ Doka 1989

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Sharing the grieving journey

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Bereavement theories: Dual process model (Stroebe & Schut (Death Studies,1999)



Grief work

Intrusion of grief

Relinquishing / continuing / relocating bonds

Denial/avoidance of restoration



Attending to life changes

Doing new things

Distraction from grief Denial/avoidance of grief

New roles/ identities/ relationships


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Bereavement theories: Growing around grief

‘In some ways the pain

of grief itself stayed much the same...but as time went on my world expanded so it felt less


Tonkin (2006)

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Tasks of grieving (Worden 1996)

1 to accept the reality of the loss 2 to process the pain of grief 3 to adjust to a world without the deceased 4 to find an enduring connection with the deceased

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SeeSaw – our story

• 1998 – Research into support needs of bereaved children by founder trustee Ann Couldrick of Sobell House Hospice in Oxford

• 1999 – SeeSaw established as a charity

• 2000 – SeeSaw begins work with a Director and a practitioner to support schools

• 2000 – first recruitment and training of volunteer support workers takes place

• 2002 – Macmillan Cancer Care fund an innovative post to support children when a parent or sibling is dying

• 2006 – Children and families practitioner appointed to develop activity days for children and their families

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Oxfordshire – some facts

• Population – 660,000

• Area – 1000 square miles

• Ethnicity – 95% white

• 50% of population live in towns and villages of less than 10,000

• John Radcliffe Hospital is the main teaching hospital centre covering all specialities

• Three county hospices – Sobell House Hospice in Oxford was one of the first in the UK

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Our aims

• To ensure rapid, flexible grief support is available to all bereaved families with children, in Oxfordshire, who are in need.

• To raise awareness and understanding of the needs of bereaved children through information and training.

• To allocate our resources as cost-effectively as possible in order to deliver high-quality support to the maximum number of children.

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How we help

• Grief support for children up to the age of 18 when a parent or sibling has died

• Specialist support when a parent, brother or sister is dying

• Dedicated schools support service

• Side by Side programme for groups

• Education, consultation and training for professionals from – Health

– Social care

– Child and Adolescent Mental Heath Services

– Police

– Youth offending

– Funeral directors

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About our service

• We provide a rapid response to requests for advice and support

• We provide support when needed and we have no waiting-list

• There is no charge for our services

• We support families anywhere in Oxfordshire

• We support families whatever the cause of death – sudden or expected, through illness or accident

• We support families bereaved through suicide, murder or manslaughter

• Young people can return to SeeSaw for further support as they develop or re-visit their grief and perhaps have more questions

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SeeSaw team • Paid staff

Director – full-time

Macmillan children and families practitioner – full-time

Schools and families practitioner – 4 days

Children and families practitioner and Side by Side coordinator – 4 days

Administrator – full-time

Fundraiser – full-time

Community fundraising assistant – 1-2 days

Finance officer – 2 days

Trusts fundraiser - 1 day – to be appointed

• Trustees – 10 trustees all of whom sit on one of three subgroups – clinical, fundraising or finance

• Volunteers – a vital part of our SeeSaw - covering office work, community fund-raising events and acting as ambassadors for talks to community groups

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SeeSaw finances

• What does the service cost?

£300,000 a year

• Where does the money come from? – 82% from our own fundraising activities

– £35000 a year from Oxfordshire Clinical Commissioning Group

– £20000 from Sobell House Hospice Charity to support our

pre-bereavement service

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Our referral process

• When a parent or sibling is dying – Families can self-refer through a phone-call to SeeSaw.

– Health professionals from hospices, oncology units, and community palliative care teams can refer – this will always be in the context of the family knowing this action has been taken

• After a death – We generally take calls from families themselves when there has been a death and this

is the preferred way in to accessing our support

– However, we often take calls from professionals, family members and friends looking for support for a family they know. Having established contact, a family member is encouraged to call us – but we will make contact ourselves if there are issues of language difficulties or great emotional distress

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What we have done so far

• Supported over 3500 children and young people and their families

• Supported over 80% of Oxfordshire schools

• Pioneered a pre-bereavement service

• Developed a programme for volunteer support workers

• Established strong partnerships with agencies throughout Oxfordshire

• Developed a specialist support service for bereavement following suicide of a parent or sibling

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SeeSaw county partnerships

• Sobell Hospice House Charity

• Oxfordshire Clinical Commissioning Group

• Oxfordshire Bereavement Alliance

• Suicide Prevention and Intervention Network

• Oxfordshire Community Volunteers and Action

• John Radcliffe Rapid Response Team

• Child Death Overview Panel

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Bereavement care pyramid - needs Level 1 Explanation and reassurance - - one off or infrequent physical symptoms - questioning - routine and schedules

Level 2 Normalise and enhance coping - regressive behaviour - constantly questioning - diminished coping - feeling isolated

Level 3 Additional needs - symptoms over time - impact on day to day functioning

Level 4 Complex needs

- suicidal ideation

- self-harming

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SeeSaw - Service/support Level 1 Information and guidance - telephone support for families - designated schools support service - website - sign-posting - training for school staff and other professionals

Level 2 Organised bereavement support - community based individual work with children and young people with volunteer support workers - Side by Side programme – activity days for families and groups of young people

Level 3 Professional child-centred support - individual work with a paid staff member - Collaborative work with Primary Child and Adolescent Mental Health Services (PCAMHS) Tier 3 support

Level 4 Mental health and psychotherapy

- Onward referral to Child and Adolescent Mental Health Services (CAMHS) – Tier 4 support

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SeeSaw - Competencies Level 1 Awareness that grief is a normal reaction to loss - - telephone support for families - designated schools support service - website - sign-posting - training for school staff and other professionals

Level 2 Knowledge and basic skills - knowledge of reactions to loss - knowledge of bereavement theory - assessment and listening skills - empathy

Level 3 Advanced knowledge and skills - academic qualifications - substantial clinical experience

Level 4 Expert knowledge and skills

- CAMHS – child mental health expertise

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Schools’ Support Service

• Designated member of staff to provide an average of two days a week for school support

• Range of options available to any member of schools staff • Service available for any death affecting the schools community – pupil, parent or

member of staff • Telephone consultations • School visits – often on the day a call comes in in cases of sudden death of a pupil • On-going support for staff working one to one with a child facing the death of a

parent or sibling, or after a death • Training for groups of staff – twilight sessions or meetings before school • Advice on setting up school bereavement policies • Schools information pack available for download from www.seesaw.org.uk • Liaison with other agencies working in schools

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Pre-bereavement work Macmillan children and families practitioner

• Started in 2002 – first post of its kind in the UK • Support provided when a parent or sibling is dying • Pioneered therapeutic use of DoGood • Referrals taken from families directly • Health professionals from hospices and oncology

units may also make a referral • Work with families before a death, often attends

funerals and maintains support after the death when needed

• Children often then attend Side by Side days

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Support following a suicide

• SeeSaw has supported hundreds of suicide bereaved families since 2000 • We recognise the need for young people re-visiting grief and will provide even years

after a suicide death • SeeSaw works in partnership with the Suicide Prevention and Intervention Network

for the Thames valley • SeeSaw provides:

• Rapid response when a suspected suicide has taken place – same day when possible

• Liaison with police about support for those affected • SeeSaw attends multi-disciplinary rapid response meeting within 48 hours

hours of a suicide death under 18 to identify bereavement support needs • Subsequent direct support for families and schools may then be offered • SeeSaw currently working on county strategy to offer the same service

following suicide of a parent with children under 18

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Volunteer support workers (VSW)

Recruitment – currently 10 VSWs working and a further 7 being trained

Training programme –

10 weekly 3 hour evening sessions

Learning journal

Creative project

Mid-term review

Final interview

Monthly small group supervision

On-going training – one evening a month plus one Saturday a year

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VSW training programme

About SeeSaw and introduction to child bereavement

Bereavement theories

Listening skills

Pre-bereavement and funerals

Beginnings – first meeting in the home

Endings – bringing sessions to a close

Creative ways of working – art, music, IT

Safe-guarding training

Recognising issues needing ongoing referral

Admin – record-keeping, confidentiality, lone-working

Sharing of projects and learning experiences

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Side by Side programme – family days and group activities

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Side by Side Project

Introduced in 2006 with one member of staff providing two days a week on organising and delivering group activity events

Bringing together children, young people and families in a variety of ways to provide

therapeutic support and reduce the sense of isolation Events arranged according to the needs of the families we are supporting at any

given time • Grandparent carers and their grandchildren • Families with bereaved pre-school children • Bereaved teenage boys moving on to secondary school • Teenage girls

Regular events

• Preparing for Christmas • Summer family activity day • Family trip to a wildlife park

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Group/individual sessions

A possible format might be:

Introductory game

Sharing a story

An activity – eg: telling the story

Ending - eg: using stones for what we are looking foward to

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Using music

• Group playing to establish identity

• Learning about being in control of difficult feelings

• Encouraging emotional expression through instruments

• Value of non-verbal communication

• ‘Active listening’ to think about mood

• The value of just having fun making a noise!

• Pass the ocean drum round the group – without a noise!

• Now pass it round and each make a sound that could describe how you may feel – angry, sad, dreamy, thoughtful

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Accepting the reality of death

The car crashed into a pole and made it fall over. It was very loud and my ears hurt... The car doors went open.... People looked at me and I cried..... an ambulance came and took me away with granny and grandad..... I wanted my mummy.

Something attacked grandad’s heart. It went BB-BB-BB and stopped. That’s his tongue – when people are dead their tongue sticks out.

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I went to hospital and they put me on a big bed with wheels. Mummy came and she cried a lot.

Freddie went on to describe granny and grandad going to heaven because the hospital couldn’t make them better. ‘The clouds in heaven are smiling’.

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Working creatively

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The blob tree finding out where a child

feels they are

You are standing at the bottom of the tree.

Which Blob would you most like to be?

Who would you most like to sit next to?

Which Blob do you feel like on your birthday?

Which Blob do you feel like as you walk home?

Which Blob felt like you yesterday?

Which Blob is most like your mum?

Which Blob is most like your dad?

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Reading stories

• Goodbye Mousie

• No matter what

• Huge bag of worries

• Dear Grandma bunny

• The day the sea went out and never came back

• A Nifflenoo called Nevermind

• When dinosaurs die

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Using puppets

• Gaining the confidence to speak

• Playing and re-enacting what is happening

• Having conversations and dialogues • Role playing • Acting the story • Confiding in a puppet

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Adjusting to a world without the


Developing emotional literacy Recognising feelings Promoting resilience Learning about coping strategies Working with schools to support young people

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Finding an enduring connection with the deceased

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Creating memory books

• Using IT • Creating DVDs with words and pictures • Slideshows • Life stories through recording memories of

those who knew the person who has died

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SeeSaw – the future

• Evaluation of our Service using the Childhood Bereavement Network Evaluation tool has been introduced and will be a regular part of our clinical process

• Maintaining our service to bereaved children by responding to feedback from client families and to developments in the field

• Ensuring sustainability for SeeSaw through generating adequate funds from a broad base of funding sources

• Improving the accessibility of our service and information for all families in Oxfordshire, including those in ethnic minority groups

• Contributing to best practice at a national level through audit, evaluation, training and conferences