“It is vital that all children and young people receive the support that they need after the death of someone close, to help them to express their feelings and develop their coping skills.” (Cruse Bereavement Care)
Ride for Eric came about in response to the tragic death of cyclist Eric Codling who was killed by a drunk and reckless driver in November 2013. The charity was founded to promote safe & inclusive cycling activities and to pilot a service to provide bereavement support for children and young people. A bike ride was organised by friends, family and colleagues to honour and remember Eric, to raise awareness of cycling safety and to raise money for Cavendish to recognise the role we had played in supporting Eric’s family after his death. The inaugural Ride for Eric (RFE) took place on 21.09.14 and raised over £10,000 to assist the Cavendish to establish a service to provide bereavement support for other families.
Cavendish Cancer Care are an independent local charity who provide practical and psychological support to families affected by a diagnosis of cancer and during bereavement.Cavendish Cancer Care established a Children and Young People’s service over 15 years ago and a team of experienced therapists work with young people, from the age of 4 years up to 18 years, who can be devastated by illness and loss. The team use a wide range of approaches to enable children and young people to explore their difficulties and find their own appropriate solutions. Usually this is through one-to-one sessions, but they may also work with children and parents together if it will be more effective. In September 2015 Cavendish Cancer Care set up a pilot service, assisted by funding from Ride for Eric, to extend the bereavement support that previously we had only been able to provide to children and families bereaved due to cancer. It was built on the current model of care which is outlined below.
Cavendish Young People’s Service Model of Care
The Children and Young People's Service offers person-centred therapy to young people up to the age of 19, whose lives are affected by cancer. This may include young people who have had their own diagnosis of cancer, who have a family member or close friend who has been diagnosed with cancer, or who have suffered bereavement due to a cancer diagnosis.
Children and young people can be affected by cancer in many different ways, including fear of death and bereavement, changes to routines and family relationships, anxiety about leaving parents or carers, inability to concentrate at school, problems with sleeping or eating, and isolation from friends. We assess the individual needs, strengths and resources of each young person, and provide person-centred therapy in order to help them to process their difficult emotions and build on their areas of resilience.
The Cavendish model of care is:
It incorporates ongoing review and is underpinned by robust governance.
On contacting the Centre a parent/guardian will be offered an initial appointment with our Young People’s Service Coordinator (an experienced healthcare professional with experience of working with families affected by a diagnosis of cancer). This initial consultation will cover obtaining further details including current situation, hopes and expectations of the service, current support and coping strategies. It also provides opportunity to share information about other sources of support and provide relevant information
On occasion the initial consultation may be sufficient and no further action needed butthe majority of parents may still want their children to access therapy and the next steps in the referral process will be explained and clearly outlined. The importance of regular weekly attendance can be explained and stressed to ensure the child gets the maximum benefit from therapy and to minimise non-attendance.
It is recognised that parents/guardians who feel supported themselves are better able to support their children. This enables the Young People’s therapist to focus on the needs of the young person and the parent/guardian will be supportive of this therapeutic support. Early intervention to provide additional resources/encourage engagement with other agencies may enable parents/guardians to feel more confident to support their children and to manage their current situation which may prevent problems arising in the future. Following on from the initial consultation the parent/guardian will be offered an appointment with one of the Young People’s Therapists as soon as one is available.
Assessment and therapy for children and young people is provided by a specialist team. The therapists are registered with a recognised professional body and have training and experience in working with this age group. Therapists are aware of the features of children's emotional and cognitive development and have experience and training in a range of approaches which enables them to respond appropriately to the needs of the individual. These includes counselling which is of a humanistic – integrative orientation and also a combination of talking therapy, art activities, therapeutic games and non-directive play depending on a child’s needs. The therapy offered is aimed at improving general well-being and helping a child/young person develop coping strategies to support healthy emotional expression. For young people aged between 16 and 19, we will assess whether their individual needs are best met within the Children and Young People's service, or by a referral to a therapist within the adult service.
Following an initial assessment, a short course of therapy may be agreed including a review. The outcomes of therapy are evaluated using a validated outcome tool. Assessment, therapy and review will usually be carried out by the same therapist (usually up to 10 sessions will be offered to each young person including assessment and review with the parent/guardian).
Children and young people may self-refer or be referred to Cavendish Cancer Care by a parent or guardian. We will then offer an assessment meeting, which may include the parents or guardians. We work in accordance with the Fraser guidelines (1985), which mean that we will assess young people's competency to consent to their own therapy, but will encourage them to tell their parents/guardians about our work with them. In addition to this, children and young people are highly dependent on their carers. We find that including parents in therapy, through assessment and review meetings, improves the outcomes for young people and families.
In some cases, it might not be appropriate for young people to attend therapy at the Cavendish Centre. We are also able to provide consultation, advice and resources to parents/guardians, to help them to support their children.
The Cavendish work within a relatively short term model of care but if a need for longer term support is identified we will discuss possible options and encourage engagement with other services.
Cavendish Cancer Care offers a confidential service and will not usually disclose information about children and young people without their consent. However, we work in accordance with local Safeguarding policies and procedures, and we will pass on any concerns about the safety or welfare of a child or young person when necessary. We would always do our best to involve the child and family in this process.
We try to ensure that care is integrated with all other agencies (both statutory and non-statutory) as much as possible and signpost whenever necessary.
Our service is provided free of charge.
Service development and implementation
Initial scoping was carried out with a wide range of people and services in Sheffield who provide support for children and families to establish availability of current services and to build strong relationships with other organisations and statutory bodies.
Research and experience highlight that individuals will need and seek support for bereavement at varying times in their lives. Children may need a space to explore their feelings straight away or it could be several years before they wish to seek help.
Initial developments included the recruitment of a new therapist and literature about the service was produced and distributed. A member of the Cavendish team was appointed to co-ordinate the young People’s Service: to promote effective communication and liaison with parents and guardians both at initial point of contact and whilst attending the Centre for support.
The service was implemented using the established model of care and therapeutic interventions included counselling and art therapy.
The initial referral rate was slower than anticipated but it was important to ensure that we had adequate capacity overall. On several occasions we had initial contact from social services and schools and provided information and resources to help inform their practice and to enable them to introduce our service to families although these contacts were not always followed up by parents/guardians. We continued our policy of self referral, the majority being from parents/guardians, but on occasion the young person themselves, as we found that this helps to facilitate engagement and commitment to attending appointments.
There were a total of 38 referrals and thirty children/young people attended for therapy. Seven parents referred to the service and were offered initial appointments: three failed to attend, two attended for initial consultation with one of the therapists but didn’t proceed to access therapy for their child and two parents have met with our Young People’s Service coordinator for an initial consultation and have children who are currently waiting to start therapy (one parent has 2 children wanting support). There are currently 6 children on the waiting list and the parent/guardian will be contacted when an appointment is available. In some families support has been requested for siblings.
The number of sessions received ranged from 0 where a parent/guardian consultation wasn’t followed by therapy up to a total of 18 sessions. The average number of sessions (including a parent/guardian assessment) that each young person who attended for therapy received was ten.
There were also frequent enquiries regarding the service from individuals, health care professionals and other organisations. These did not always result in a direct referral in to the service but often information was provided over the phone or literature sent out in the post to provide appropriate support and signposting. Several enquiries were received from Social Services which didn’t result in a direct referral to the service.
A review was be undertaken with the child and also when possible with the parent/guardian. When appropriate they would be asked to provide written feedback and comments on the service and the support they had received. On occasion it wasn’t possible to obtain written feedback: a therapeutic review may have taken place part way through therapy and the evaluation form was then given or sent out by post to complete at the end of therapy and never returned, others did not complete all the therapy sessions and on occasion were lost to contact and for some of the younger children it was not appropriate or possible to complete a quantitative evaluation.There were also frequent enquiries regarding the service from individuals, health care professionals and other organisations. These did not always result in a direct referral in to the service but often information was provided over the phone or literature sent out in the post to provide appropriate support and signposting. Several enquiries were received from Social Services which didn’t result in a direct referral to the service.
Whenever possible at review the parent and child/young person were asked to score how helpful they had found the sessions on a scale of 0-6, with 0=extremely unhelpful up to 6=extremely helpful. Of the parents who completed a review one scored 3, three scored 5 and nine scored 6.
Of the children/young people who completed reviews one scored 3, one scored 4, two scored 5 and twelve scored 6.
Feedback and comments from parents, children and young people was extremely positive as is illustrated by the following comments:
“Really enjoyed the art therapy.”
“Having someone to talk to outside immediate family and friends was extremely helpful.”
“I found all the advice very helpful.”
“The use of art to express my feelings was very helpful.”
“Helped to increase confidence and self esteem.”
“Had a more positive outlook after completing therapy.”
“Self help techniques including visualisation and breathing techniques were very helpful.”
“It was helpful to talk about my worries without pressure and feeling uncomfortable.”
“I came to my sessions feeling angry and upset but left feeling calm.”
“It makes me feel very good coming here.”
“Is more settled at school---less angry.”
“Now able to talk and share within the family and feeling less angry.”
“Found a safe place in her mind.”
“Creative therapies were very helpful.”
“Making a “memory jar” and using the sand-tray were helpful.”
“Being able to talk to someone was invaluable.”
“It is a fantastic service.”
Qualitative evaluation illustrates that individual therapeutic support is an important factor that has contributed to children and young people experiencing:
Improvement in wellbeing
Feeling better able to cope with emotions
Better school attendance and achievement
Comments and Reflection
“Through this pilot as a Young People’s Therapist I was able to go beyond supporting young people bereaved through cancer and offer a more comprehensive support to children and young people.
Clients see were bereaved through a wide range of causes. Some young people explored losses that were very recent, whilst others were revisiting their grief many years later and starting to experience and express it in new ways.
Feedback from parents and young people was very positive, with many acknowledging the value of having a safe space to express and explore grief (and the thoughts and feelings evoked).”
Points for reflection
For children to get maximum benefit from the therapy sessions they need to be able to commit to attend weekly. This is dependent on a parent bringing them to the Centre and often there are competing demands on their time both at home and at work. Several sessions were cancelled or the child/young person failed to attend/wasn’t brought for therapy.
Flexibility is important and children and parents/guardians will quite commonly change their minds about whether they want to have sessions and it is entirely right that this big step is controlled by themselves.
Some families presented with very complex needs which necessitated liaison with other organisations and health care professionals. It is apparent that some young people require specialist assessment and longer term support, particularly in relation to mental health and may require home visits and multi- agency working, which the Cavendish is not in a position to provide.
Parents presented with unmet needs of their own which subsequently can have a negative impact on their parenting. This was of particular concern with parents whose bereavement was not cancer related as there is very limited bereavement support currently available and there can be long waiting times to access this. It is a recognised fact that parents/guardians who feel well supported themselves are better able to support their family. The Young People’s Therapist is able to focus on the needs of the young person but for them to gain maximum benefit the parent/guardian needs to be supportive of this therapeutic support.
A need for further dialogue can be identified, between all providers of children and young people’s services, to consider direction and to explore funding opportunities to shape the future of bereavement support services for children and young people.
Thank you to all who have contributed to the bereavement pilot: Ride for Eric for their funding, Young People’s Therapists and Service Coordinator and to all at Cavendish Care who have provided support for the service.