Newham woman helps transform end of life care

Greater support is now available in Newham for people at their end of life and their families, after a woman shared her heartfelt story with local NHS commissioners. 

After hearing about her experiences caring for her mother, NHS Newham Clinical Commissioning Group (CCG) and Newham Council’s social care team developed new specialist services to help others in a similar position. 

The extra support – including a new out-of-hours service – will ensure people in Newham receive better end-of-life care in their own home or place of residence. 

The changes were set in motion in September 2017 when Mani, from Stratford, attended the CCG’s annual general meeting (AGM), and asked for an explanation why she had faced such a distressing experience in caring for her mother at the end of her life in her own home. 

Mani had given up work for a year in order to care for her mother. Both knew that her mother’s cancer could not be cured and they hoped for a peaceful and pain-free death in the family home. But when the moment came, she felt abandoned by the NHS at the time they needed it most. 

Over the next few months, CCG staff met Mani and worked with her to understand what had gone wrong. Technically, everything that should have been done, had been done, but it was clear that many key things could have been done differently to make their difficult situation that much better. This included having a regular and approachable point of contact to help navigate the care system. 

The CCG team, and social care colleagues at Newham council took this seriously and worked with Mani to help improve end of life care in the borough. 

In January 2019, Newham CCG launched a new out-of-hours service to support dying people who would prefer to be cared for in their own home or usual place of residence, and their families. This service also ensures that end of life medication is available out of hours so that no dying person who prefers to be at home has to be admitted to hospital because they cannot access pain relief.  

Newham Council’s adult social care service is providing the funding for an end of life champion and ‘clinical navigator’ role. This role is intended to deliver the knowledge, information and navigation that Mani described she needed. 

Mani said: “I came to the AGM to share my story. Caring for anyone at the end of their life is distressing and I just wanted people to know how on my own I felt. It is really pleasing that out of this situation, other people may now have better support to help them through what is a difficult time.” 

Coral Alexander, Senior Transformation Manager at Newham CCG, said: “By coming to be heard at our AGM, Mani held the CCG to account and this is something we take very seriously. 

“We thank her for her input following what was an incredibly difficult time for her and her family and she should be proud that others will benefit from her bravery in coming forward. We continue to invite her participation in our journey towards the best possible care for people at the end of the life, and we remain accountable to her and our residents, patients and their families.”