Adam Rogers Trust

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Chairman’s Update May 2016

Chairman of the Adam Rogers Trust, Fiona Rogers, writes

“The novel approach of the Adam Rogers Trust’s Care Team working together in a multi-disciplinary team has benefitted patients enormously since its inception.

In 2006, when my son Adam was being treated for cancer, there was just one specialist oncology outreach nurse, funded by a charity. She was an expert in her field, but, crucially, supported parents too. I could not have managed without her advice and support. She had to support as many patients and families as she could – a very difficult task – and I could see that she was overstretched. There were no dedicated paediatric speech and language, physio or occupational therapists for the patients. These services had to be accessed on an ad hoc basis, often meaning delays in treatment for children. Today, children are assessed by the ART therapists quickly and effectively, meaning that treatment and care can start immediately.

Time spent in hospital with Adam meant that my husband, Mark, and I saw that parents, siblings and the wider family needed support too. As a result, the first clinical psychologist and counsellor posts were created – important members of the Adam Rogers Trust Care Team. They work very closely together to help patients and families and their support has been crucial to all during a time of great difficulty and distress. Many parents have praised their vital services and, indeed, some parents have set up their own charities to fund additional services.

The ground breaking work of the Adam Rogers Trust team has made an enormous difference to the ability to assess and treat patients both in hospital and at home. The ART team has increased the number of staff on the paediatric oncology ward, and working as part of a multi-disciplinary team has meant much greater co-operation and cross fertilisation of ideas between professional staff. This has resulted in faster initial patient assessments, which in turn leads to the needs of the children being met more swiftly and, hopefully, the cutting down of related distress for them and their families.

The ART team continues to work closely with outpatients, liaising with local hospitals nearer patients’ homes, GPs, hospices and many other services in the community, providing expert advice to staff in these places and continuity of care to the patients and family

Equipment funding

The Adam Rogers Trust has funded the purchase of specialist state of the art drugs pumps to facilitate the delivery of drugs intravenously, both in hospital and at home.

ART has also paid for wheelchairs for children and young adults so that they can remain mobile at home.

Grants

The Trust gave a grant of £10,000 to publish a booklet about palliative care. This booklet is a practical guide for parents who nurse their children at home. It was published by the Children’s Cancer and Leukaemia Group (CCLG), a charity which is the national association of healthcare professionals involved in the treatment and care of children with cancer. The booklet was mainly written by specialist oncology nurses at Addenbrooke’s.

This booklet, made available nationwide for free through hospitals, won a prestigious prize at the 2011 British Medical Association’s Medical Book and Patient Information Awards in 2011. It was described as “ an excellent resource for parents of children requiring palliative care” and many parents have praised it for its thoroughness.

ART also partially funded the further studies of our Physiotherapist, when she undertook an MSc in children’s physiotherapy with particular regard to helping children with cancer. She was able to bring new expertise, ideas and methods back to Addenbrooke’s to benefit patients and teach colleagues.