Collaborative working improves care for children with life-limiting conditions

A partnership between three local care providers has been hailed as a “beacon of collaborative working”, following a successful two-year pilot.

Dougie Mac Hospice, Midlands Partnership University NHS Foundation Trust (MPFT) and the University Hospitals of North Midlands (UHNM) have joined forces to ensure that families of local children with life-limiting conditions have better choices around their child’s care.

The need for a more collaborative approach was identified by the hospice and the paediatric consultants from UHNM who were also caring for children at Dougie Mac Children’s Services (formerly Donna Louise Children’s Hospice).

Sarah Thompson, Consultant Paediatrician at UHNM stated; “Before this service was developed, as a team we were often faced with families who tried to manage challenging symptoms at home or were forced to bring them to the Children’s Assessment Unit which was not always ideal. We are now able to offer symptom management and care where the family/ child needs it, be that at home, hospice or the hospital. This has resulted in less emergency admissions to hospital as well as reducing the length of stay when admitted which can only be a positive for these children and their families.”

A formal project was established and applied to NHS England for funding alongside funding from the Integrated Care Board (ICB). Funding for a four-year pilot between Dougie Mac, MPFT and UHNM was granted in 2020 and the group began to offer symptoms clinics at Dougie Mac’s Children’s Services from late 2020. The funding also included the recruitment of two full time roles – a Community Nurse Specialist (CNS) and a Physiotherapist and both these posts were filled in 2022. 

MPFT added, “These roles have enabled a more co-ordinated system wide approach, providing family centred care to meet the needs of the child and family. This joined up working has further supported the communication between the hospital and community settings, therefore improving the transition between different care provision.”

As the pilot was nearing its end, a business case was put forward to the ICB to request the continuation of the funding. There was enough evidence and demonstration of achievements from the four-year pilot that the business case to continue the model, and further increase the resource, was successful. As a result an additional CNS role and another Physio role have been created, with both posts filled this summer. The four roles are now able to support children and young adults, and their families, wherever and whenever they need it.

The collaborative approach has supported the end of life care for several children.

Lynn and Trevor Hill, whose foster child received end of life care, added, “The first class service you and the team provided for us recently when our beautiful foster child sadly passed away was nothing less than outstanding. It was a seamless, outstanding services that was faultless. This service helped tremendously in preventing our foster child having to go into hospital for the last few days / weeks or hr life. The transition from home to Dougie Mac’s Children’s Services went without a hitch and was within a couple of hours which was unbelievable. We cannot thank you enough for the outstanding service you and your team provided for us.” 

Anmol Zoque’s daughter, Jannah, was also cared for by the UHNM and Dougie Mac teams, “Alongside Dr Roe we had a fantastic team of doctors and health professionals who always prioritised Jannah’s health and made themselves so accessible for when I needed them to make sure I got all the help I needed.”

Jane Jones, Head of Children’s Services at Dougie Mac, said, “Dougie Mac is proud to be part of this beacon of collaborative working and it’s a great example of good practice that can be introduced into other areas. It builds on the strong working relationships that have been fostered and strengthened throughout the project and promotes the multi-disciplinary approach between multiple children and young people services; facilitating the choices of the families, whatever that might be.”

The support and commitment from UHNM, MPFT and both children and young people’s hospices, Acorns and Dougie Mac, was fundamental in developing and delivering this programme from the ground up. Key to the ongoing success was equal partnership, ownership and collaboration; fully realising the benefits of a system first approach in supporting the ICB to meet its legal responsibility to commission health services that meet their population needs which includes children’s and young people’s palliative care services.  

Picture: Isaiah Gordon and his mum Naomi at a hospice event