Barnsley Council: Collaborative working with the voluntary and community sector to improve individual experiences at the end of life

In Barnsley, South Yorkshire, a Macmillan Social Worker is employed by Barnsley Council to sit within the multidisciplinary team of clinical nurse specialists, occupational therapists and dieticians to provide expert support for people in need of complex palliative care and support at end of life.

This role, managed by the council, works across the whole council area and is predominately there to help unpick the issues people are facing and help them access appropriate support throughout their care pathway.

This holistic support has helped to embed personalised and individualised end of life care, with the specialist social worker having considerable involvement with the following:

• Advance care planning conversations with patients, working to have these at the most appropriate time in a patient care pathway. This supports early identification of patient need and shared decision making in meeting end of life care needs.
• Supporting patients adjust and manage the distress they are experiencing due to changes in their illness – linking in with occupational therapists and social services to assist when patients’ needs change due to deterioration.
• Helping patients to manage their finances by signposting them to appropriate advice and support on leaving work, securing benefit entitlements, as well as dealing with mortgages and insurance.
• Integrating and co-ordinating care - linking with local hospices and hospitals to develop a more seamless pathway of care.

• The specialist social worker also spends a huge amount of time supporting carers to manage the dynamics of their relationship with their loved one so that they can continue to provide care at home. This is supported through working with carers, a local college and nursey staff.
• Likewise, they also provide vital support to young people, helping parents to be able to talk to their children about what’s happening and providing age appropriate information. The role provides an important function in supporting vulnerable young people who may not recognise that they are carers, accessing community support to build up a network around them, and ensuring support is in place at school.

• The role has allowed for more patient centred end of life care targeted at meeting the needs of patients, and their loved ones resulting in more efficient care. Although it is difficult to quantify impact, we know from speaking to professionals in the service that the role of supporting carers is likely to have reduced the numbers of emergency admissions to hospital through giving people the confidence, they need to support people at home.
• The work the social worker has done around bereavement preparation for carers, including those who have dealt with multiple close family deaths, has also had an impact on the fear about conditions such as cancer and has helped people to feel more confident about talking about death and dying. This has improved the mental and emotional resilience of the community.

• The Macmillan partnership with the council has had a broader positive effect that just the role itself. The specialist social worker has initiated a Social Care Champions Group to promote specialist palliative care across the borough, with meetings every two months to share best practice.
• As part of this the Macmillan social worker supported specialist palliative care education across other social care teams within the local authority with opportunities to pursue QCF qualifications in EOL care, advanced communication skills and attend a foundation course open to social care professionals across the borough.
• Due to the success of these education initiatives a champion is now provided in each area who has an additional knowledge base to support their own social care area teams as well as developing their own special interest. In the words of a Macmillan professional “they are a motivated and passionate group”. There is also a standardised care plan used across the borough for those in the last days of life, teams are more connected across social care and increasingly there is a recognised common language used for end of life and palliative care.

Similar roles also exist in South Tyneside and Northumberland and the evolution of these roles has led to new initiatives and ways of working in North Tyneside, Newcastle and Gateshead.

In North Tyneside Macmillan worked alongside the Council to support the creation of a palliative social care team. The service uses an “integrated health and social care collaborative approach” to the delivery of care and support, offering the person receiving care and their carer continuity of care throughout their end of life journey. The service also provides support to social work colleagues who because of existing relationships are best placed to continue to care manage existing adult social care service users, thus providing an equitable enhanced approach to the delivery of end of life support for all.

To inform the service Macmillan worked with the local authority, people affected by cancer and other partners to coproduce a survey for people who had used palliative and end of life services which was then cascaded through GP practices. The process enabled joined up working between GPs and the local authority. It also allowed the wider system to understand the opinions, needs and concerns of people who may not otherwise have been heard from, with the findings shared to influence the commissioning and development of palliative and end of life services in North Tyneside. Initial service feedback received from service users, carers and professional colleagues is extremely encouraging: the service is recognised as offering high quality patient centred palliative care and support to North Tyneside residents.

In South Tyneside Macmillan, alongside a consortium of other stakeholders from across the borough, supported the local authority to remodel their palliative care system after the closure of the one hospice in the borough.