Liz Taylor Macmillan Support and Information Manager Countess of Chester NHS Foundation Trust

Support What is it? What is it? What’s currently happening? What’s currently happening? How people can get involved? How people can get involved? What’s missing? What’s missing?

Support ………. “Touchy Feely”PracticalEffective Dictionary defines it in a variety of ways : To bear and hold up without giving way Gives aid or assistance To encourage Found in a shared experience

What we are aiming to do? MCCN Partnership Group, Patient, Carer & Public Involvement Strategy identifies the provision of support as a key priority for involvement. NICE 2004 Psychological Support Objectives include: The psychological needs of all patients and carers are assessed on a regular basis…….(especially at) the time of diagnosis, end of treatment or recurrence The psychological needs of all patients and carers are assessed on a regular basis…….(especially at) the time of diagnosis, end of treatment or recurrence Patients and carers offered psychological support according to their needs, with those experiencing particular distress referred to professionals with specialist expertise Patients and carers offered psychological support according to their needs, with those experiencing particular distress referred to professionals with specialist expertise End of Life Care Strategy 2008 People who are nearing the end of their life should have the opportunity of having the best possible care and support as should their carers through the experience and after the death of a loved one People who are nearing the end of their life should have the opportunity of having the best possible care and support as should their carers through the experience and after the death of a loved one

Worried Sick a report by Macmillan Cancer Support 2006 The stress of managing everyday life following diagnosis and treatment is immense The stress of managing everyday life following diagnosis and treatment is immense The psychological and emotional impact continues long after the cancer itself is treated The psychological and emotional impact continues long after the cancer itself is treated The impact on personal finances can be devastating The impact on personal finances can be devastating The damage to relationships is far more widespread than generally realised The damage to relationships is far more widespread than generally realised

MCCN Partnership Group Support Objectives Looking after ourselves To support new and existing group members with education and training To support new and existing group members with education and training To remain in regular contact with cancer self help and support groups To remain in regular contact with cancer self help and support groups To support the Chairs of the CNPG and locality group s To support the Chairs of the CNPG and locality group s Looking after others Network Buddy scheme Network Buddy scheme Survivorship -to ensure people who are living with cancer are supported Survivorship -to ensure people who are living with cancer are supported Palliative and end of life care - to influence service provision to ensure patients and their families are supported appropriately Palliative and end of life care - to influence service provision to ensure patients and their families are supported appropriately

A network wide initiative Network Buddy Scheme Aim: to provide volunteers, typically former patients or carers, who would be willing to support people currently experiencing a similar situation to their own There are two planned pilot projects on the Isle of Man and CCO There are two planned pilot projects on the Isle of Man and CCO Questionnaires will be given to patients via CNS’s to ascertain what they might want from a buddying type of service e.g. face to face, telephone or support or identify if more practical support is what’s needed Questionnaires will be given to patients via CNS’s to ascertain what they might want from a buddying type of service e.g. face to face, telephone or support or identify if more practical support is what’s needed The Isle of Man have set up criteria and ideas for core training for buddies. The Isle of Man have set up criteria and ideas for core training for buddies. CCO will be using their volunteer manager as the key for recruiting volunteers, induction, guidelines etc. This will hopefully be starting in April 09 supervised by two CNS’s CCO will be using their volunteer manager as the key for recruiting volunteers, induction, guidelines etc. This will hopefully be starting in April 09 supervised by two CNS’s

A local initiative Several people contacted the Countess of Chester Cancer Information and Support Project about survivorship issues Several people contacted the Countess of Chester Cancer Information and Support Project about survivorship issues The Wirral and Western Cheshire Cancer Partnership Group were consulted The Wirral and Western Cheshire Cancer Partnership Group were consulted A multi-disciplinary working group, including two former patients, developed the 5 week evening programme “Living Life after treatment” (LLaft) in meeting rooms in the local city centre A multi-disciplinary working group, including two former patients, developed the 5 week evening programme “Living Life after treatment” (LLaft) in meeting rooms in the local city centre Individual letters of invitation with flyers were sent by CNS’s to patients who had recently completed initial cancer treatment with no apparent evidence of active disease Individual letters of invitation with flyers were sent by CNS’s to patients who had recently completed initial cancer treatment with no apparent evidence of active disease 29 patients attended the first programme and 20 patients attended the second plus a number of partners at both 29 patients attended the first programme and 20 patients attended the second plus a number of partners at both

A local initiative continued Living Life after treatment (LLaft) COCH Living Life after treatment (LLaft) COCH A 5 week programme for people who have had treatment for cancer A 5 week programme for people who have had treatment for cancer Six different cancer types were represented at the first group and 7 at the second Six different cancer types were represented at the first group and 7 at the second Aims to fill the gap which can be left after active treatment is completed and to help people recognise that others often experience similar issues Aims to fill the gap which can be left after active treatment is completed and to help people recognise that others often experience similar issues Identify ongoing sources of support Identify ongoing sources of support Patient and Carer Involvement Facilitator attends each programme Patient and Carer Involvement Facilitator attends each programme

An individual initiative……. Developing a support group for people of working age (COCH) Several patients / carers identified that they would like to meet with others in a similar situation Several patients / carers identified that they would like to meet with others in a similar situation One former patient was willing to take the lead in establishing a group One former patient was willing to take the lead in establishing a group He has linked into other resources provided by Macmillan for establishing a group and there is now a small working group looking at practicalities name, venue, promotional leaflets etc He has linked into other resources provided by Macmillan for establishing a group and there is now a small working group looking at practicalities name, venue, promotional leaflets etc The group will be “patient” led but supported by myself The group will be “patient” led but supported by myself

How can people help…….. Share ideasGive feedback Join in Volunteer

Living Life After Treatment Support Groups Buddies websites Welfare Benefits Psychological Support Event – 16 June 2009 Survivorship End of Life What’s missing