Liz TaylorLiz TaylorMacmillan Support and Macmillan Support and Information ManagerInformation Manager

Countess of Chester NHS Foundation Countess of Chester NHS Foundation TrustTrust

01244 36494801244 364948

SupportSupport

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?

SupportSupport ………. ……….“Touchy Feely” Practical Effective

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?What we are aiming to do? MCCN Partnership Group, Patient, Carer & Public MCCN Partnership Group, Patient, Carer & Public Involvement Strategy identifies the provision of Involvement Strategy identifies the provision of support as a key priority for involvementsupport as a key priority for involvement. .

NICE 2004 Psychological Support Objectives includeNICE 2004 Psychological Support Objectives include:: The psychological needs of all patients and carers are The psychological needs of all patients and carers are

assessed on a regular basis…….(especially at) the time of assessed on a regular basis…….(especially at) the time of diagnosis, end of treatment or recurrencediagnosis, end of treatment or recurrence

Patients and carers offered psychological support according to Patients and carers offered psychological support according to their needs, with those experiencing particular distress their needs, with those experiencing particular distress referred to professionals with specialist expertisereferred to professionals with specialist expertise

End of Life Care Strategy 2008End of Life Care Strategy 2008 People who are nearing the end of their life should have the People who are nearing the end of their life should have the

opportunity of having the best possible care and support as opportunity of having the best possible care and support as should their carers through the experience and after the death should their carers through the experience and after the death of a loved oneof a loved one

Worried Sick Worried Sick a report by Macmillan Cancer a report by Macmillan Cancer

Support 2006Support 2006

The stress of managing everyday life The stress of managing everyday life following diagnosis and treatment is following diagnosis and treatment is immenseimmense

The psychological and emotional impact The psychological and emotional impact continues long after the cancer itself is continues long after the cancer itself is treated treated

The impact on personal finances can be The impact on personal finances can be devastating devastating

The damage to relationships is far more The damage to relationships is far more widespread than generally realisedwidespread than generally realised

MCCN Partnership Group MCCN Partnership Group Support ObjectivesSupport Objectives

Looking after Looking after ourselvesourselves

To support new and To support new and existing group members existing group members with education and with education and trainingtraining

To remain in regular To remain in regular

contact with cancer self contact with cancer self help and support groupshelp and support groups

To support the Chairs of To support the Chairs of the CNPG and locality the CNPG and locality group sgroup s

Looking after othersLooking after others

Network Buddy schemeNetwork Buddy scheme

Survivorship -to ensure Survivorship -to ensure people who are living people who are living with cancer are with cancer are supportedsupported

Palliative and end of life Palliative and end of life care - to influence care - to influence service provision to service provision to ensure patients and their ensure patients and their families are supported families are supported appropriatelyappropriately

A network wide initiative A network wide initiative Network Buddy SchemeNetwork Buddy Scheme

Aim:Aim: to provide volunteers, typically former patients or to provide volunteers, typically former patients or carers, who would be willing to support people currently carers, who would be willing to support people currently experiencing a similar situation to their ownexperiencing a similar situation to their own

There are two planned pilot projects on the Isle of Man and CCOThere are two planned pilot projects on the Isle of Man and CCO

Questionnaires will be given to patients via CNS’s to ascertain Questionnaires will be given to patients via CNS’s to ascertain what they might want from a buddying type of service e.g. face what they might want from a buddying type of service e.g. face to face, telephone or email support or identify if more practical to face, telephone or email support or identify if more practical support is what’s neededsupport is what’s needed

The Isle of Man have set up criteria and ideas for core training The Isle of Man have set up criteria and ideas for core training for buddies.  for buddies. 

CCO will be using their volunteer manager as the key for CCO will be using their volunteer manager as the key for recruiting volunteers, induction, guidelines etc. This will recruiting volunteers, induction, guidelines etc. This will hopefully be starting in April 09 supervised by two CNS’shopefully be starting in April 09 supervised by two CNS’s

A local initiativeA local initiative Several people contacted the Countess of Chester Cancer Several people contacted the Countess of Chester Cancer

Information and Support Project about survivorship issuesInformation and Support Project about survivorship issues

The Wirral and Western Cheshire Cancer Partnership Group The Wirral and Western Cheshire Cancer Partnership Group were consultedwere consulted

A multi-disciplinary working group, including two former A multi-disciplinary working group, including two former patients, developed the 5 week evening programme patients, developed the 5 week evening programme “Living Life “Living Life after treatmentafter treatment” (LLaft) in meeting rooms in ” (LLaft) in meeting rooms in the local city centrethe local city centre

Individual letters of invitation with flyers were sent by Individual letters of invitation with flyers were sent by CNS’s to patients who had recently completed initial cancer CNS’s to patients who had recently completed initial cancer treatment with no apparent evidence of active diseasetreatment with no apparent evidence of active disease

29 patients attended the first programme and 20 patients 29 patients attended the first programme and 20 patients attended the second plus a number of partners at bothattended the second plus a number of partners at both

A local initiative continuedA local initiative continued Living Life after treatment (LLaft) COCHLiving Life after treatment (LLaft) COCH

A 5 week programme for people who have had A 5 week programme for people who have had treatment for cancer treatment for cancer

Six different cancer types were represented at Six different cancer types were represented at the first group and 7 at the secondthe first group and 7 at the second

Aims to fill the gap which can be left after Aims to fill the gap which can be left after active treatment is completed and to help active treatment is completed and to help people recognise that others often experience people recognise that others often experience similar issuessimilar issues

Identify ongoing sources of support Identify ongoing sources of support Patient and Carer Involvement Facilitator Patient and Carer Involvement Facilitator

attends each programme attends each programme

An individual initiative…….An individual initiative…….Developing a support group for people of Developing a support group for people of

working age (COCH) working age (COCH)

Several patients / carers identified that they would Several patients / carers identified that they would like to meet with others in a similar situation like to meet with others in a similar situation

One former patient was willing to take the lead in One former patient was willing to take the lead in establishing a group establishing a group

He has linked into other resources provided by He has linked into other resources provided by Macmillan for establishing a group and there is Macmillan for establishing a group and there is now a small working group looking at practicalities now a small working group looking at practicalities name, venue, promotional leaflets etcname, venue, promotional leaflets etc

The group will be “patient” led but supported by The group will be “patient” led but supported by myselfmyself

How can people help……..How can people help……..

Share ideasGive feedback

Join in Volunteer

Living Life After Treatment

Support Groups

Buddieswebsites

Welfare

Benefits

Psychological Support Event – 16 June 2009

Survivorship

End of Life

What’s missing